One or many; same or different? Optimizing a social media presence
One or many; same or different? These are the big questions in developing a social media presence especially for a small organization. A friend works at http://www.mortonsneuroma.com/, and I looked at their website.What are the Nutritional Needs of Cancer Survivors?
I am working with Fang Fang Zhang, MD, PhD, and other colleagues at Tufts University on the following study. The following is some information from Fang Fang about the survey goals and how to participate:
Cancer Survivors are highly motivated to seek information about food choices and dietary changes to improve their health. However, a recent study comparing cancer survivors’ dietary patterns to federal guidelines indicates that they often fall short. People who have survived cancer eat fewer green vegetables and whole grains than people without a history of cancer do. Survivors also weren’t getting enough fiber, vitamin D, vitamin E, potassium or calcium, and were taking in too much sugar, fat and sodium, as defined by the 2010 Dietary Guidelines for Americans issued by the Department of Agriculture and the Department of Health and Human Services.
Cancer Survivors Often Have Poor Diets, Which Cancer Affect Their Long-Term Health http://www.wiley.com/WileyCDA/PressRelease/pressReleaseId-121044.html
What influences cancer survivors’ eating patterns? The research team at the Friedman School of Nutrition Science and Policy of Tufts University is conducting a survey to understand cancer survivors’ nutritional needs and the challenges they are facing in making healthy food choices.
They Need Your Help! Visit http://ow.ly/VZkWE to take a short survey (10 minutes) and contribute to this important research! Your support will help advance research to meet the nutritional needs of the growing population of cancer survivors.
If you have any questions or concerns, please feel free to contact the Tufts research team at CARESurvey@tufts.edu, or through Twitter @CARE_study and Facebook (Cancer Survivors Heathy Eating – CARE Study). Principal Investigator: Fang Fang Zhang, MD, PhD, Tufts University
Who are the Jailbitters and the Weapons of Mass Reduction: An Interview with Julia Ferguson about Workplace Wellness in Adams County, CO
As Fitbits and other wearable activity trackers become increasingly common for individual and group use, it is easy to wonder how successful they are at increasing and sustaining fitness. Kristen Daudelin and I were therefore excited to talk on June 25, 2015 with Julia Ferguson, Sustainability Coordinator at the Adams County Manager’s office in Brighton, CO, about the FitBitters Challenge program she coordinates for the county to use Fitbits to increase employee fitness. She told us about how her office set it up, what the County has learned so far, and how, part way through the initiative, the program has increased fitness, as hoped, and has also increased morale and comradery.
How the Program Started
The Office of Performance, Innovation, and Sustainability started planning in February 2015 and the six-month challenge launched April 1. The Office obtained roughly $15,000 funding to purchase the devices and incentives for the program. The $100 Fitbit Flex were purchased for $80 each with a discount from Fitbit, and employees were asked to contribute $20 towards their portion of the device; the County covered the remainder of the cost. Employees were also required by law to be taxed on the benefit, which was approximately another $20. Employees keep their Fitbit at the end of the program, or even if they drop out.
Employees were notified about the program, and a web form was available for signing up. When it was made available, at 8 am, 30 people signed up in 10 seconds. The cut off for signing up was at 120 participants, but 180 registered before the form could be shut down.
Employees were allowed to participate using their own device, resulting in 242 total participants in the Challenge, out of 1800-2000 employees (a number that fluctuates since some are seasonal). The only requirement, besides signing up quickly enough, was that employees had to be benefit eligible.
The County used a third party vendor for the pre- and post-assessments, which are optional, as required by their legal department. For the 188 participants who choose to have them, they record weight, BMI, body fat percentage, blood pressure, and waist circumference (how often are health assessments repeated, only beginning and end? Yes, just a pre- and post- assessment). The County receives aggregate data regarding the health assessments from a third party vendor in a HIPAA compliant fashion. Demographics of participants: 35 men and 153 women, most in their 40s, followed by 30’s, and then 50’s.
What Happened the First Three Months
Julia provided an orientation sheet for participants. She provided training as needed to help people to set up their Fitbits and encouraged them to join teams. They used Fitbit’s app (with their own branded site for the county? No, just the Fitbit.com dashboard. Unfortunately at the time we started the program there was no way to brand it for corporate/company programs. I believe Fitbit is working on developing that capability. ) to set up their teams of 4-6, and over 200 of the 242 participants joined teams.
Over the past few months, Julia set up monthly challenges and sent out encouraging, lighthearted, weekly emails. Each competing group used a group page and a personal page. Several teams have very clever names, including:
- Jailbitters (from prison workers)
- Weapons of mass reduction
- Fit to be fabulous
- Thin to win
- Lean and mean
- Blister sisters
- 6 ferociously fit females
- Preventative maintenance (custodial workers)
How the Program Will End
Julia and her office’s efforts included everything from promoting the program, troubleshooting and training for participants, monitoring use, and planning incentives and prizes. Teams will have until the end of September until the competition closes and prizes are distributed.
Participants receive entry into prize drawings when certain challenges are achieved. These challenges become progressively more difficult over time. Julia has noticed that people are not asking about the prizes but are instead self-motivated and encouraging towards others.
Forms of Assessment
The vendor is supplying reports of aggregate data while Julia is careful to make sure that legal and communication teams work together. So far, a few people have expressed concern and a few people have dropped out; the few people who have dropped out have done so because they have stopped working for the county such as for retirement. Only 3-4 participants have otherwise left.
What Julia Has Learned So Far
Julia personally has learned a lot in the process including workplace labor laws and HIPAA compliance. The Office of Performance, Innovation, and Sustainability is interested in individual versus group motivation and other intangibles, such as how to motivate and engage employees. Even though this is a voluntary program, Julia learned that she could not offer prizes for activities to ensure that everyone has the same opportunity to get prize entries.
On a larger scale the County has surmised that employees are very self-motivated. In addition to the tools provided through the FitBitters Challenge, employees are using mobile devices and Fitbit forums. Furthermore Julia notices colleagues walking more even when they aren’t participating in the program. People say that it is helping them motivate their families to increase their fitness and that they are meeting people at work they would normally not come in contact with, so there are social as well as fitness benefits. A post survey will include some of these less quantifiable metrics, also attitude workplace.
What Julia Would Do Differently
Adams County has learned several lessons in regards to effective pilot program implementation using ‘wearables’ that will inform future program development. More effective communication at the beginning about the web form and being able to stop it when the goal number reached is the first. Also, some people didn’t have the access to emails and couldn’t participate because they were not part of roll-out. Next time around, the County would utilize a dummy account so that the coordinator would not need to spend hours subtracting her own data as a participant for each group. For larger programs that are beyond the pilot phase and cost is not a constraint, other options include opening the program to all employees and hold more events such as a field day or nutritionist talks.
Advice from Julia
Julia had a lot of valuable advice for us. She told us to be careful when communicating about the intent of the program and deciding how devices are distributed. Due to the popularity of these devices, people may enroll and then lose interest in participating, so it is important to encourage people to enroll only if they will remain active participants. She inferred that possible issues might be encountered outside the 18-34 age range when it came to troubleshooting the technology. Julia suggested reaching out to sustainability coordinators and asking participants for donations as well as reaching out to Fitbit in hopes of getting returned or unwanted Fitbits. Other suggestions included reaching out to Target, Sports Authority and Best Buy with a vinyl sticky that could go on cases of devices or electronic recycling programs. Julia also suggested reaching out to gyms.
Conclusion
Julia closed by saying that she was happy to share with others the cost effective $15,000 program that has had a huge impact on their county. Post assessments of health measures at the end of the program will provide more information about the value of the program in terms of reducing health care costs and improving health, but in the meantime employees are more motivated, more productive, and more active because of their participation!
My thanks to both Julia Ferguson, for her time, and Kristin Daudelin, my summer intern, for her assistance interviewing Julia and writing this with me.
This fall I’m a Tisch Faculty Fellow
I am honored to be selected to be a Tisch College Faculty Fellow this academic year. Jonathan M. Tisch College of Citizenship and Public Service is part of Tufts University. My initiative, RecycleHealth, is what I will work on as a fellow, and I believe it is public service. The goals of RecycleHealth is to collect unused wearable activity trackers from people who upgraded or are no longer using their devices, and give them to people who can’t afford them but are interested in increasing their fitness. We haven’t had our first meeting yet, but I am looking forward to it!
A Second Life for Unused Wearable Activity Trackers
If you have a Fitbit or other activity tracker and stop using it or upgrade, what do you do with the old one? There are few options to recycle or resell it. Enter RecycleHealth.
My hypothesis is that the people who are least likely to own wearables are those who might benefit most. I am requesting donations of unused wearables through RecycleHealth and then giving them a second life by using the refurbished, donated wearables in pilots with populations who rarely purchase and are unlikely to afford them.
RecycleHealth was described in the Boston Globe business section: http://www.betaboston.com/news/2015/07/02/recyclehealth-wants-to-donate-that-fitbit-sitting-in-your-sock-drawer/.
Emergency preparedness on campus: the amazing videos my students made
What makes an effective emergency preparedness video for college students? First, students have to want to watch it, then they have to like it enough to keep watching it, and finally they have to learn from it.
My students in Designing Health Campaigns Using Social Media conducted needs assessments that showed that videos needed to be short – generally under 1 or 2 minutes – and funny – but appropriately so. They also had advice from Mark Robertson that videos need a clear message and call to action.
Based on the plans they created, with goals, needs assessment, and competitive analysis, and having their choice of topic and tool, students created what I thought – and the class thought – were really effective videos. I was impressed not just by how well they handled their topics but by the creativity and unique approaches they used.
If you have feedback for them, please write a comment!
- Annaick and Rhiana: Are You Prepared? Active Shooter
- Annie: Emergency Preparedness: Student Caught in Meteor Attack
- Avneet: 8 Steps for the Perfect Emergency Kit
- Christina, Emily, and Gus: How Would You Prepare for a Hurricane?
- Nikhil: Dental Emergency Part I and Dental Emergency Part II
How to plan an emergency preparedness video for a university
- Know what is the one message you want to get across.
- Humor is popular but it is dangerous too. If you are using humor, be certain that no one will take offense. Do not poke fun at students, faculty, or staff.
- Make your point and find a balance between making your point and entertaining people.
- Use sample audiences before publishing to make sure you aren’t hitting the wrong nerve and your point comes across.
- It is a challenge to get people’s attention for too long. Start out and pique people’s interest, and keep the video short.
- Even how you promote a video is important. Say something that piques their interest to get them to watch.
- Finally, be careful about your central characters because, if well-received, you will be stuck with them and may regret some of their eccentricities.
The Newest Health Tracker is a Mirror
Smart refrigerators, smart thermostats, smart toothbrushes – everyone is trying to create new digital health markets. While intriguing, it is sometimes hard to see how they will improve my health or quality of life. Until now: Sandra Rosenbluth, a student in Mobile Health Design, is revolutionizing the mirror.
Everyone has a mirror; they vary in size and quality, but none are smart until now. And smart in a way that might change how people think about diet and fitness, moving away from weight or BMI as a measure of success or failure.
I was scrolling through my Facebook news feed one day, when I read a status that truly horrified me. A friend had written, “Since I started working out, I feel better and look better, but my weight on the scale hasn’t gone down, and I feel really sad.” This statement really stuck with me, even more so when she admitted she was addicted to her scale and couldn’t possibly throw it out. Therefore, when the time came to think of a smart device for my Mobile Health Design final paper, I designed the ShapeWatch Mirror.
The idea behind the ShapeWatch Mirror is straightforward: You can’t always rely on a scale to tell you whether a new diet or exercise plan is working, so rely on your mirror instead. The ShapeWatch Mirror has the ability to take a photo of the user, which it then sends to a phone or tablet. A contour outline is drawn around the outside of the user’s body, making a trace of his/her shape. That contour line can be merged onto previous outlines, showing the user exactly where his/her shape has changed. In other words, while the scale might show the same number, the contour lines can show loss of fat in the midsection and gain of muscle in the arms.Using techniques I learned in Mobile Health Design, I was able to show how the ShapeWatch Mirror was truly aimed at its target audience by creating sample personas of potential users. By comparing the mirror to other smart devices, I was able to show how it utilized previous devices’ strengths, like tracking, while discarding weaknesses, like relying on weight as the sole measure of progress. Together, these techniques helped me design a strong product. To learn more about the ShapeWatch Mirror, read my full paper.
Why the #ALSIceBucketChallenge Went Viral: Almost the Perfect Storm
The ALS ice bucket challenge, better known as #ALSIceBucketChallenge or #icebucketchallenge, was almost the perfect storm for viral fundraising. In my course, Designing Health campaigns Using Social Media at Tufts University, we analyzed why the challenge went viral.
Not surprisingly, given its popularity, my students had all heard about it and watched challenge videos. About half had done it. Some researched amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, and including what they learned in their videos. While my students’ videos were undoubtedly shared, they did not have millions of views. The three most popular videos that I found in a search each had over 19 million views. Most popular was The Simpsons, an animation. Second was a compendium of fails, which included people who were supposed to pour water on someone and accidentally poured it on themselves. Third was Bill Gates, pulling the rope of a device he designed to dump water on himself.
The challenge videos were not only popular and entertaining, but resulted in a significant increase in donations. The ALS Association has received over $100 million from more than 3 million donors. They raised only $2.8 million in the same period last year hence had a 3,504% increase. Notably, the challenge was not started by them but by a person with ALS, 29-year old Peter Frates. A Boston-area resident, he posted his ice bucket challenge video on July 31 and the challenge spread mostly through the month of August 2014.
Time Magazine reported, “The Ice Bucket Challenge has been a social media phenomenon, grabbing the attention of millions of Americans including many celebrities and political figures. Some have speculated that it might forever change the way charities approach fundraising.” Bearing out that it was a social media success was not only video views but tweets. There have been more than 4.2 million tweets about the challenge, peaking at 1,877 tweets per minute.
An analysis of 1,500 randomly selected videos found that 20% of participants took the challenge indoors; 30% of participants were female; in 53% water was dumped by someone else; 26% of participants didn’t mention ALS; and only 20% of participants mentioned donating money. Given that many people used #icebucketchallenge without ALS in the hashtag, they may not have even connected the challenge to the disease. This is similar to Movember, which many men, including two of my students, participated in without knowing it was for prostate cancer and other men’s health issues.
The main criticism of the challenge was that it is an example of “slacktivism” in which people are more interested in bringing attention to themselves than to a cause while ostensibly participating. Other criticisms were that so many participants didn’t mention ALS, the waste of water, especially where there are droughts, and the lack of information about how the windfall will be used. In fact, the detailed analysis of where the ALS Association spends money was in HealthNewsReview.org. Personally, what I thought was missing was more information about the disease itself, including advice on how to help people with ALS and their caregivers.
The main benefits are the increase in donations and the greater awareness of ALS. Possible side effects are that many people shot and uploaded a video for the first time, making it more likely they will do so again, and that some participants may have engaged in fundraising for the first time. However, does this mean they are more likely to again?
Undoubtedly every health organization is hoping to capture some part of the success of the challenge to increase donations and awareness of their health issue. The copycats are emerging, an example of which is Doubtfire Face for Suicide Prevention: Started by a supporter of the American Foundation for Suicide Prevention, it honors the late Robin Williams by replicating his pie-in-the-face scene from “Mrs. Doubtfire.“ Another one also uses a pie: Eat Pie for HI (Hyperinsulinism is abbreviated HI). And there are others, many involving a video and hashtag.
My students and I discussed why the challenge’s viral nature may be hard to replicate: fatigue, lack of novelty, and the difficulties of orchestrating virality. Fatigue is already occurring with the ice bucket challenge even though new videos are still appearing, albeit at a much slower rate. People like novelty and have limited attention spans, which is why the Livestrong yellow wristband spread until a rainbow of bracelets for every cause saturated the market. Another reason that the challenge may be hard to replicate is that it was not planned by the ALS Association but was something a person with ALS did that caught people’s attention. Most of what goes viral in social media is not orchestrated.
The challenge was almost the perfect storm. The factors contributing to this were:
- The 24-hour time period to complete the challenge so little time for procrastination
- Hot summer weather made it fun and refreshing to complete the challenge, reminiscent of childhood fun
- Many people are on vacation, or have more flexible schedules, in August when it peaked
- The challenge had very simple rules, low cost, and low risk making it easy to complete
- At the same time there was a little vulnerability in appearing in a video and doing so under sub-optimal but not embarrassing circumstances
- It could be done by all ages and abilities
- The challenge connected people through the challenging process as well as the sharing of videos, in fact, many did the challenge with another person pouring or in a group with friends or colleagues
- There was room for creativity, humor, and personal expression in how the challenge was completed yet also room to make a statement about ALS
- ALS is a disease affecting as many as 30,000 Americans so most people participating in the challenge probably don’t have ALS or know anyone with ALS and can participate in a light-heartedly way that might not work for a more common or better known disease.
The ALS Association didn’t provide instructions, but did offer their thanks for donations and posted two warnings. One was that the challenge “may not be suitable for small children, the elderly, anyone in poor health or animals.” The other suggested thoughtful water usage.
What is next? As one of my students questioned, will the challenge migrate to the Southern Hemisphere as cooler weather arrives in the US? Can all these factors come together again and can a viral campaign be planned by a health organization? Probably not, because so many factors came together and contributed to the challenge’s success. Given the likelihood that health organizations are planning campaigns, they may achieve better success by working with, and supporting, the efforts of individuals like Peter Frates. My hope is that new campaigns have a great focus on awareness and prevention, and on how to help people who have a disease like ALS and their caregivers, not just on donations.
Preventing Workplace Bullying: An Interview with Greg Sorozan, Massachusetts State Coordinator of The Healthy Workplace Bill
“Bullying is part of the spectrum of abusive behaviors that exist in this world. I know about child abuse, child neglect, sexual abuse, domestic violence, substance abuse, and now adult abuse at work. They all work together to create many, if not most, of the health and mental health problems we have,” said Greg Sorozan. Greg is President of SEIU/NAGE Local 282 and Massachusetts State Coordinator of The Healthy Workplace Bill, working to prevent bullying in the workplace. I read about his work in a Boston Globe article and his MA legislative activity and asked to interview him about his work as a patient activist.
Lisa Gualtieri: Why did you become a patient activist?
Greg Sorozan: I was bullied at work more than 20 years ago.
LG: Was there a specific incident or series of incidents?
GS: The mistreatment caused one half of the Work Unit to quit. Productivity went down. My job duties (Sr. Training Coordinator) were changed almost daily. Resources and time were denied me. My health started to be effected. Sleep became difficult.
LG: What were the steps you took?
GS: My Union had no contract language to deal with the form of discrimination and abuse that was being perpetrated. Because I was in the rare position of knowing everyone in the administration of the large state agency, I forged alliances with people who would listen and who had a vested interest in the success of our Unit – in Legal, Policy, Finance, IT.
LG: Were there barriers such as stigma or privacy at specific points that you had to overcome?
GS: “Chain of Command” was the first and foremost barrier. Orders came from the Director/Bully. To not follow these orders was tantamount to insubordination. Only when “orders” were shared with other parts of the agency did Administration look differently upon this person. An example is how I was brought in, late, to consult with the “Developers” (Deloitte & Touche) on their newly designed Training Registration System. They wanted my “input”. I told them it would not work and why. I then asked them why they had designed it in the particular way. I was told that my Director had been insistent upon it. My response was: “This is why it is wrong”. The project was never completed. It cost the Commonwealth about $1 million in developer’s fees. There were other projects-all ruined by this person.
LG: What have you done that has the greatest impact?
GS: I am a social worker at heart. I’ve allied with the two most influential people in America on the topic of Bullying in the Workplace: Gary Namie, Ph.D.,(The Workplace Bullying Institute, Bellingham, WA.) and Professor David Yamada, Suffolk Univ. Law. (Minding the Workplace blog). With their guidance and help I found language to deal with Bullying in the Workplace. I negotiated that into our Contract Bargaining Agreement with the Commonwealth of MA., and have helped hundreds of people over the course of the last five years. Concurrently we have drafted legislation and have introduced that legislation for adoption into Law. We will not stop until the Healthy Workplace Bill is passed. You can ask any of the 5000 Healthy Workplace Advocates who have joined with us in working to get the law passed.
LG: What are the mechanisms you use, such as speaking, writing, and social media, for communication and outreach?
GS: We have developed a core team of talent who reach out to the public via social media, the web, and person to person. Meetings, training workshops and informal gatherings continue to be planned. Our website: www.MAHealthyworkplace.com is the primary attractor of people looking for help and understanding of what they have been experiencing in the workplace. We are continuing to involve Advocates in activities designed to spread awareness and educate others – including their legislators.
LG: What are the primary sources of satisfaction you experience related to your activism?
GS: My affiliations with Gary Namie, David Yamada, Deb Falzoi, and others (my NAGE brothers and sisters) who help me to keep my focus in a violent world.
LG: What are the primary difficulties or frustrations you experience related to your activism?
GS: We’ve introduced the Healthy Workplace Bill three times. January 2015 we will do so again. Getting a law passed is not as simple as it appears. Politics does not take a straight line toward enactment. I have several paid lobbyists at my disposal. They’ve given me quite an education.
LG: What do you think could help non-activists voice their innovations and experiences on health care issues relevant to themselves?
GS: My first thought is to develop a website that would serve as an “exchange” for ideas and problem areas. Get people communicating and learning that they are not alone. Develop opportunities for others, with resources, to join/guide/support and help foster needed changes.
LG: What advice would you give to patients who are not currently activists?
GS: It helps your recovery to actively participate in activities that promote positive change.
LG: What do you believe organizations could do to engage non-activists to provide feedback on and promote healthcare innovations?
GS: Develop models for outreach and ideas from the public. Actively solicit responses while understanding that some people are more deeply effected than others by traumatic events.
LG: What could organizations do to more effectively promote initiatives to patients?
GS: Change the “frame” away from patient to more of a “fellow journeyer”.
LG: What do you see as the ultimate measure of your impact in terms of the number of people you reach or the changes resulting from your work in people’s lives, in health policy, and in medical practice?
GS: Gary Namie’s meta-research shows the promise of great savings in health care costs, increased productivity at work, more creativity, and lots of other great stuff whenever people like doing what they are paid to do! I’ve personally seen that all happen, already, with groups I have helped. I believe that Bullying is part of the spectrum of abusive behaviors that exist in this world. I know about child abuse, child neglect, sexual abuse, domestic violence, substance abuse, and now adult abuse at work. They all work together to create many, if not most, of the health and mental health problems we have. I think that our society needs to take a step back and be more civil. Easily said. Makes me think of the search for the unifying particle in Physics. Lots of theories, but at least they are looking for a unifier.
Interview with Jessie Gruman: “We want to get better and get back to our lives”
Jessie Gruman, who sadly died July 14, 2014, was someone I greatly admired as a person and as a patient activist.I interviewed her in late April for research I was conducting on patient activism, and she graciously allowed me to publish the interview, wanting, not surprisingly for those who knew her, to do everything she could to use her experiences to help others.
Lisa: Why did you become a patient activist? Was there a specific incident or series of incidents?
Jessie: I worked on patient engagement for many years prior to speaking as a patient. My original impetus to work on these issues was probably receiving my first diagnosis of cancer at age 20 and being shocked at how non-compliant I was, even though my best chance of surviving depended on me behaving myself. How could this be?
I didn’t feel particularly pressed to speak from the perspective of a patient until my third cancer diagnosis in 2004, when I realized that the patient voice I was hearing in the media and around health care was unrealistic and tended to depend on war metaphors. Those patients who were speaking out with their “can-do” attitude based on limited experience with serious illness in no way represented my experience of having to work so hard to find the right care for me and to go through difficult surgeries and treatment regimens while feeling really bad and wondering if I was going to live.
I was astounded at how much of my care I had to organize and direct – more with each of my five cancer diagnoses. How do people who know less and have fewer resources manage this? It was this astonishment – and my realization that our ability to engage effectively in our care constitutes an equity problem for all of us – that motivates me.
Lisa: What were the steps you took?
Jessie: I started an organization with unrestricted support from the John D and Catherine T MacArthur Foundation to address these concerns. I have been successful in raising over $27m of mostly unrestricted money for this organization.
Lisa: Were there barriers such as stigma or privacy at specific points that you had to overcome?
Jessie: I have always believed in “in for a penny, in for a pound,” i.e., if I am going to speak as a patient, nothing patient-y is off the table.
I think many patient activists are by definition undervalued and their knowledge under-rated. I have spent my entire career working in and around health policy, health voluntary organizations, the NIH, AHRQ and the IOM. While not deep, my knowledge of the processes of medicine and health care and training and publishing, etc., is broader than many health experts and I am a good arguer and formidable patient representative. Just ask around.
Lisa: What have you done that has the greatest impact?
Jessie: To frame patient engagement as an equity issue.
Lisa: What are the mechanisms you use, such as speaking, writing, and social media, for communication and outreach?
Jessie: CFAH (my organization) has run the Health Behavior News Service since 1996. Working with the print, digital and broadcast media, we raise the visibility of new peer-reviewed research findings relevant to people making decisions about their health and health care. I did a lot of public speaking (20-35 speeches/ year) until my most recent diagnosis. I maintain a daily curated Twitter feed on the topics of equity, evidence and engagement and have an active presence on Facebook and LinkedIn.
Lisa: What are the primary sources of satisfaction you experience related to your activism?
Jessie: Knowing that I’m right.
Lisa: What are the primary difficulties or frustrations you experience related to your activism?
Jessie: Knowing that it doesn’t matter whether I’m right or not to the people who are shaping health care today. Patient concerns are – rhetoric to the contrary – simply a low priority for the delivery of health care except for those deluded souls who believe that health care will be cheaper if we patients are more engaged, i.e., the more risk that can be shifted to us, the more likely we are to refuse expensive care. This isn’t going to happen and is also frustrating: being engaged in one’s care doesn’t mean compliance with it.
Lisa: What do you think could help non-activists voice their innovations and experiences on health care issues relevant to themselves or to government agencies or health-related organizations including the “patient voice”?
Jessie: I think a post-visit questionnaire like I get from Open Table for every restaurant reservation would help people feel like they have an opportunity to contribute to change that matters to them.
The vast majority of us have no interest in changing “the system” or our hospital or even our clinic. We just want our doctor to call us back when we are worried about a rash from our new medication or get a prescription re-fill without having to go into the clinic again. Really – most people aren’t interested in being a patient voice. We want to get better and get back to our lives.
Lisa: What advice would you give to patients who are not currently activists?
Jessie: Find the right doctor or nurse practitioner to work with you. Negotiate a care plan that you can follow and if you can’t figure out how to check in with your clinician. Feel better.
Why should anyone aspire to become an activist? I would never encourage anyone to do so.
Lisa: What do you believe organizations could do to engage non-activists to provide feedback on and promote healthcare innovations?
Jessie: Who cares about healthcare innovations? Most of us are mostly healthy most of the time. Going to the doctor constitutes quite enough innovation, thank you. We don’t know what’s new and what’s old and it doesn’t concern us. We have other things to do, like work, play with our kids, go shopping, and fix the truck. We want experts—professionals—to use their expertise to help us get better. Expecting me to help health professionals to do their job more effectively unfairly presumes my interest, devalues my time and asks me to provide charity for them.
One of the biggest problems I have observed with those who are smitten with “the patient voice” is a tendency to want to rely on the least powerful and least educated involved in health care to solve their problems.
Lisa: How could organizations more effectively promote initiatives to patients?
Jessie: I don’t want an initiative. I want the right information and the right care and then I want to go home and not think about the doctor until I get sick again.
Lisa: What do you see as the ultimate measure of your impact in terms of the number of people you reach or the changes resulting from your work in people’s lives, in health policy, and in medical practice?
Jessie: There is no ultimate measure. My role is to represent a realistic view of what it is like to be a patient these days so that stakeholders who say they are interested in patient-centered care (or reforming care in the direction of serving patients generally) can respond to solid information / data rather than this odd collection of notions that all we need is a good pair of Jimmy Choo stilettos for our chemo treatment, and with our sense of social commitment intact, we’ll conquer even the most fearful, tedious, painful conditions, bend the cost curve and solve the problems that have eluded experts for all these years.
My role is not to find other stakeholders’ solutions. In a market economy, I am the customer.
My job as someone who wants people to be able to get better value from their health care is to describe what it now takes for me and my fellow patients to find good care and make the most of it: what barriers and limitations we face and what skills and resources seem to be required to overcome all those obstacles…and then ask / beg / beseech / make the case that the different stakeholders with their different domains of accountability and expertise address these deficits.
Happy Father’s Day. Here’s a Fitbit.
Father’s Day ads, cards, and store displays are everyplace. Now many retailers are pushing activity trackers as the perfect present, such as the Fitbit, the Nike+ Fuelband, and other device. They track number of steps taken per day and more. But, is there any stigma associated with gifting an activity tracker with the implication that the recipient is out of shape? Is there any difference in usage patterns between activity trackers purchased for oneself or given as gifts?
The Mobile Health Design class at Tufts University School of Medicine investigated the question: How do we market these gifts so they are meaningful, cherished, and used? They found three theory-based categories to help market fitness trackers for dads:
Emotional Appeal: Dads are especially sentimental around Father’s Day. There is an opportunity to show a father how valuable they are in their family’s life. Just like they kept their children safe and active while they were young, it is time for them to remain safe and active with a fitness tracker.
Social Support: Have bundled trackers so child and father can both participate together. People are much more likely to engage in a behavior if others around them are participating – especially when it is competitive, like between a father and child!
Instrumental Support: Purchase an activity tracker with equipment for an activity that the father enjoys – golf clubs, a new bowling ball, or new running shoes. It will reduce the barriers for engaging in activity and both tools will reinforce each other’s use.
Bradley Moore, MPH, co-course director for Mobile Health Design, culled these from the responses to the “challenge” we gave students in class. (Thanks, Bradley!)
My idea was to bundle activity trackers with Father’s Day cards: Remember when we used to _ (hike, go to the playground, …) Dad? Let’s go for a walk together!
Overall, activity trackers are like many products where the manufacturer’s goal is to sell as many as possible. What we like to think about is behavior change, how people will respond to the gift and what they might do with it the first time they use it – if they get to that point. One student told us about a Fitbit that was about to be regifted, collecting dust in the unopened package. That’s what our challenge – and the great ideas students had – hopes to avoid.
Everyone has a wonderful story but not everyone knows how to tell it: CancerForward survivor stories
Many health websites include stories, but some have richer sets of well-written stories than others. After seeing the stories in CancerForward™, I spoke to Beth Sanders Moore, the founder, to ask her why they include stories and how they solicit them.
Beth (left) is herself a thirteen-year breast cancer survivor, her mother is a thirty-two-year breast cancer survivor, and her grandfather was a cancer survivor. Through these experiences she has seen how the experience of being a cancer patient has changed, with people asking questions and evaluating treatment options now in a way they didn’t even thirteen years ago. Beth has also seen a change in what survivors want, and CancerForward was created to meet this need, with survivorship stories being one of the most important components, both for the people who read them and those who tell them. Beth sees many ways that people try to make a difference – volunteering, making donations, or telling their story – and all provide a way to give back or pay it forward.stories in CancerForward™, I spoke to Beth Sanders Moore, the founder, to ask her why they include stories and how they solicit them.
Since people are drawn to celebrities, the stories include those of high-profile survivors, like Cokie Roberts, but most of them are of people from all walks of life who have survived cancer. Having seen that the site includes a link to “Share Your Survivor Story”, I asked Beth about their process. When someone contacts them through this form, a writer works with them to help them tell their story. Beth said that some people submit stories that need little editing, while others need assistance because they don’t know how to express their experiences clearly or they become too caught up in emotions when recounting their story. Beth said that people process their experiences differently: some tell their stories soon after treatment, and some wait a long time into their survivorship. The completed stories are catalogued on CancerForward’s site by both cancer type and by practical, physical and emotional issues common to most survivors.
Interestingly, many stories shared with CancerForward are sent in the evening. Beth suspects that with fewer distractions of daily life, most people have more time for self-reflection at night and may also grow lonely and want to reach out by sharing their stories. She notes that far more people go on the CancerForward site and read stories than submit them. Some begin the “share” process and don’t finish it. The average time a site visitor stays on the site is about five minutes; some are less than a minute and some are for hours. If site visits are an indicator of popularity, the stories of high-profile women survivors are most popular, followed by the self-written stories submitted by women. That trend tracks with survivorship information consumption in general, says Beth. Historically, women discuss their experiences more openly and more often than men.
I asked Beth how many story inquiries they receive and she said 2-4 every month on their website. Many comments posted in connection with a story are essentially mini- stories. CancerForward maintains its Facebook page so that survivors and caregivers can make comments and/or post their stories there. I asked Beth if she thought people had stigma or privacy concerns about submitting stories, and she said that she thought it was a very individual decision to share a story although less likely in some cultures than others. She further thought that people feel good about sharing their story and receive support from others through the comments.
When asked if time and money were infinite what CancerForward would do differently, Beth immediately said they’d add more video stories, which people enjoy. Producing high quality videos is costly, which has prevented CancerForward from creating as many as they would like. Because of the uptick in smart phone video production, there is a project underway in 2014 to accommodate appropriate “selfie” videos and brief self-written stories on the CancerForward site. Because the amount of the site’s educational information and story lines has grown so rapidly, CancerForward is reworking its entire site to make navigating the site and locating content easier for visitors.
Beth and I discussed how every story has a message. Cokie Roberts’ message was that cancer was not going to stop her. While at one point CancerForward considered letting people create blogs on the site, they ultimately decided that blogs are too personal and detailed while the stories convey a clear message and are more hopeful. In our discussion we identified a taxonomy of health sites that incorporate stories. They range, at one extreme, from sites that request stories but have none displayed, to, at the other extreme, Weight Watcher’s success stories, which are very professionally done. CancerForward’s stories are near that end, because of their use of writers to work with people. Beth concluded, “Everyone has a wonderful story but not everyone knows how to tell it.”
I asked Beth if she has a favorite story on the site, a question for which she said there isn’t a simple answer. At one time or another, she’s read every story that’s been submitted whether it made it through the publication process or not. “They’re not all upbeat or hopeful, but they’re all real and to me, compelling. There are so many, many facets to cancer survivorship and contexts in which people fight cancer.” Beth admits that for inspiration, she’s drawn to the stories of adolescent and young adult survivors who’ve readjusted their sails, succeeded in forging a “new normal” in their lives, and are moving forward. And, she concedes there is a story that she thinks about often that speaks to resilience and facing reality. It’s the last conversation Beth had with her friend, Elizabeth Edwards about two months before Ms. Edwards died of breast cancer. Believing it important that survivors speak openly about palliative care and preparing for death, Ms. Edwards allowed Beth to publish their personal conversation as a story for CancerForward. It turned out to be the last “interview” Mrs. Edwards would give about her cancer and her life.
5 Minute Social Media Makeovers: Stepka Family Dental
I presented 3 workshops on Social Media for Dentists at Yankee Dental Congress 2014 in Boston, where I met Joanna Stepka, who was at my workshop to learn more about how to use social media for her husband’s dental practice. Like most people in the workshop, she had a smartphone, but, unlike many people there, she was using it to tweet during the workshop. Impressed that she was live-tweeting during the workshop, I looked at the online presence of Stepka Family Dental after the workshop. Here is my 5 minute makeover.
Stepka Family Dental’s Facebook page had a “vanity url”, namely https://www.facebook.com/StepkaFamilyDental. Easy to do, but not all dental 
practices do it. The first time I looked the cover photo was bland but the new one (right), updated 2 days after the workshop, is great and I assumed was inspired by what I taught. The pictures are clearly not stock photos, which I recommended dental practices avoid because they are so bland, but ones of the staff.
Could this be improved? In the workshop I showed sites that use group shots instead of individual ones. The individual photos, however, are easier to update if there is turnover. I like seasonally appropriate imagery and these look like they were taken outside in the summer, not recently. Overall, they are great pictures and the staff look competent and approachable, which is what you want in a dental practice.
The branding for the practice is clear. The tagline is “Providing dental excellence to Rhode Island families since 1973. We specialize in treating your family like it’s our own.” It is a little long but welcoming and establishes credibility by showing that this is an established practice.
The Facebook page has 341 likes, which is much better than most of the dental practices with a Facebook presence that I showed during the workshop.
I suspected that the practice must inform patients that they are on Facebook. (In fact, Joanna emailed me the new sign for the waiting room, which is included to the right.)
The Facebook posts are of an appropriate frequency – around 6 a month at a glance. They do not seem to be on a schedule, but rather are occasional updates about office activities, seasonal information, and some dental humor and education. Some of the posts have likes and comments, showing that people are engaging with the content.
The website and other social media
The blog leads to the website, which has more information on the practice, the staff, testimonials, and work in the community. The other forms of social media are depicted with icons, including Google+, Pinterest, and Twitter. The website highlights the recent Facebook posts, which is great for letting patients know not just that Facebook is used but what is posted, which is more enticing than an icon.
Of the other social media platforms, Twitter is the most heavily used after Facebook and, on the website the icon for Twitter should not be last since it is updated frequently. The profile on Twitter (right), “Providing dental excellence to Northern Rhode Island families since 1973,” a truncation of the Facebook tagline that maintains the consistent branding. The image is, I understand from Joanna, in the process of being updated. Currently there is text over text, which looks sloppy.
The tweets are great – like the Facebook posts, they are interesting, diverse, and quite human, which is very appropriate for a family dental practice. The frequency is a bit sporadic, but there are at least a few tweets every month, so anyone looking would never feel like it was an abandoned account (I had examples of those in my workshop) or one not worth following. There are fewer followers than on Facebook, so there are opportunities to inform patients about the account when they are waiting for or leaving an appointment or in any emails sent out. Also, some professional Twitter accounts will indicate who is tweeting, which Joanna might consider.
Opportunities
The other social media, besides Facebook and Twitter, seems more experimental, like Pinterest and the blog. While there is some overlap between what is posted on the different platforms, the messaging is never exactly replicated, which is good. And experimentation is good, not just from the perspective of what Joanna tries, but from that of seeing what reaches and appeals to their target audience. Certainly it would be better if the website and all social media used the same name, Stepka Dental or Stepka Family Dental, and the same banner imagery, but each type of social media has restrictions and limitations, making it hard to replicate branding.
While the posts and tweets were varied and interesting, more on the staff might be of interest. Even the fact that staff were at Yankee Dental Congress could be highlighted, since patients want their dentists and hygienists to be current in their knowledge. Other opportunities are to provide some additional educational materials targeting the needs of the different age groups they see, since it is a family practice, and to include more images of the staff. They should consider featuring some patients, with permission, in short videos or pictures, and even add pictures where possible to the testimonials. These images could replace the stock photos currently in use on the website. Given that the posts have personality, the images should too. Since they are involved in the community, more of that would give “human interest”. They could consider the use of a quarterly newsletter or eCards sent by email for patient birthdays or for holidays like Valentine’s Day with dental care messages.
Finally, in a search on “North Smithfield dentist” they came up high, so clearly what they are doing is resulting in good visibility in search results. Their steady use of multiple social media platforms can only help with visibility. I say this without knowing their goals, their other forms of promotion, or their metrics.
Conclusions
My overall impression is very positive. Without knowing the 
practice’s goals, but assuming that they are trying to attract new patients and to keep current patients engaged and educated, I think they are doing a great job. I heard from Joanna, who is shown here with her husband, Dr. Greg Stepka, “I was definitely inspired by your workshop and knew that I could ‘tidy up’ our social media fairly quickly. I plan on implementing e-newsletters and inviting patients to follow our social media as well. I started Pinterest & Google + after your workshop so those are in their infancy.” This ended up not being as much of a makeover but a commentary on what is clearly a work in progress.
Google Glass: First Impressions and Posing Questions
Nerd chic? Geek chic? I even updated my twitter profile to show off my new Google Glass. My “winning tweet” was “#ifihadglass I’d provide context-sensitive, evidence-based exercise, diet, & adherence reminders & risk warnings to improve public health”. In retrospect, not bad for 137 characters! That was February 21. On March 28 @ProjectGlass tweeted, “@lisagualtieri You’re invited to join our #glassexplorers program. Woohoo! Make sure to follow us – we’ll DM in the coming weeks.” I was amazed how many people were excited for me, and asking to borrow them, including people who I never would have suspected would have heard of Google Glass. June 3 I received notification that “Your Glass is now ready!”
Less than 48 hours later, after the excitement of getting them and being trained to use them, my first reaction to them is that I’m not sure I want to wear glasses, or glass, or any device on a frame over my ears. I am pleased not to need glasses or contacts. Maybe it is my upbringing. At my aunt and uncle’s 50th wedding anniversary yesterday, I noticed that my mother’s eyes were closed in the 2 pictures of her in their wedding album. She didn’t wear her glasses when she was dressed up, and probably couldn’t see much without them. Are they my new fashion accessory?
My second reaction is that it is not yet apparent how Google Glass can improve my life and how I can fulfill the promise of my tweet. To improve my life, I’ve thought about teaching, research, meetings, exercise, and dancing, as a start, and see ways to capture and lifelog but not yet how to make substantial improvements. To improve public health, I asked myself, “What is possible if everyone had them?” and variations of “What if cancer patients had them?” I have glimmers of ideas but am still working on answers.
The Death of Reflection
I love my smartphone. It provides immediate information I need to run my busy life. But, there is a downside to constant connectivity for me and for society: the death of reflection.
Being hyper-connected—and agitated when not—means losing those precious moments when disparate ideas merge, when pleasant memories bring joy, and when pondering a problem leads to innovation. Accessing and using too much information all the time stifles reflection and all of its benefits.
Fitness, I believe, offers the solution of listening to one’s body, which is the antithesis of the quantified-self movement in which everything is tracked. When I run, I can feel last night’s overindulgence at dinner or, equally, last night’s eight hours of sleep. But all the devices to track where I am, my pace, or the comparison to my “friends” or my last run, distract me from the reflective process that often leads to great work after my run.
It’s not just when I run. It is all those moments waiting for an elevator or standing in line when I check my email, see if anyone has mentioned me on Twitter, or make my next “Words with Friends” move.
Letting one’s mind wander and reflecting on both one’s internal thoughts and feelings and the external world leads to great ideas—and by that I don’t mean just new and better devices.
A version of this will appear in a report on “Disappearing Futures” in the September-October FUTURIST. Thanks to Cynthia G. Wagner, Editor of the FUTURIST, and to Analicia Villanueva and Mike Gualtieri for their feedback.
Why I Run: A Reflection at the “Action Stage”
Why I Started
I started running 15 weeks ago because I decided to do the opposite of what I felt like doing. I was exhausted after teaching a 1-week course and, when resting didn’t help, I decided to run. I was already exercising, so, when I tried Couch25K, which my son recommended, I was beyond “couch”. But my previous attempts to run had been not serious (in college), had been at too fast a pace to sustain (a few years ago), or purely in my head (New Year’s resolutions). The latter seems to be common; when I told people I was running, many said, “I’ve been thinking of starting too.” It’s like when people view modern art and say, “I can do that.” But most don’t.
Using the language of Transtheoretical Model of Change, these people are at the precontemplation stage. I was too, until I started my “Do the Opposite” plan. The other stages are contemplation, preparation, action, and maintenance. I am solidly at the action stage.
What I Have Accomplished So Far
Even though I didn’t follow Couch25K, it made me aware of starting slow and building up. I knew the importance of a schedule thanks to my runner husband, Mike, and the exercise class I’ve been going to for years. I committed to running three times a week, and have only had one time I run twice (and a few I’ve run four times).
While my first run was six minutes, I have now completed a 5k. My longest run was 1:04:13, which included going up Nob Hill in San Francisco. I called this “breaking the one-hour barrier,” after reading about (the very different) “Breaking the Two-Hour Marathon Barrier.”
I have run in the rain, which seemed unappealing, but wasn’t bad after the first minute. I have run in heat and humidity – I started in August – and on crisp, fall days. I understand why runners say that fall is their favorite season.
Why I Persisted
It was great to see progress: I was able to go on longer runs and rarely felt tired at the end. It was really fun to run with Mike, who would run at my pace, not his own faster one. I especially liked running when we travelled – the aforementioned one at APHA in San Francisco and another in Montreal. Because I go to an exercise class, I generally don’t exercise when travelling, arguably when I need it most. Running is also a great way to see a city.
Sometimes I found running boring, although less so the longer I do it. I tried listening to music, and tried thinking about something specific (that was how I wrote this – in my head, while on a run).
I tried apps for running and didn’t like any of them. They took more effort to configure than seemed reasonable given that I just wanted to try them, and they asked for my height, weight, and age without telling me how the information would be used (apparently only to calculate how many calories I burned). Their tracking didn’t motivate me because I already had a sense of accomplishment at the end of each run. The reminders I still get from the apps would be unlikely to motivate me if I had started running and then stopped, as the apps believe. (I would like to think further how app design can incorporate Transtheoretical Model of Change in my Mobile Health Design course next summer.)
However I used Twitter and Facebook to informally track my runs, and loved the support and encouragement I received. It was fun to run into friends and colleagues who had not commented online but congratulated me on my running accomplishments. The funniest was when I saw a friend a few days after my 5k and she did a celebratory dance, singing my finish time. I have made new friends too, like Boston Globe writer and runner Elizabeth Comeau.
What’s Next
I am at the action, not the maintenance, stage; I feel committed to continuing but it feels a little tenuous. Mike surprised me once with new running clothes, and I also bought a long-sleeved running shirt in one of my favorite colors, thinking about Janet Wasserstein, who told me that she played better tennis in stylish tennis outfits. With the days getting colder, I need to avoid deterrents, and cold is definitely one of them.
I sometimes catalogue the benefits of running to keep myself from slipping out of the action stage. I like how running is a barometer of how I feel: what’s on my mind, did I get enough sleep? I enjoy being outside and moving, especially given how much I sit the rest of the day. My ”skinny jeans” fit the same, although I assume running has many health benefits for me. I am still working on how my insights can be incorporated into the design of my “Do the Opposite” app for new runners.
It seems like I’ll be at the maintenance stage when I actually look forward to running, not to being done. For right now, I like the sense of accomplishment.
Mobile Health Search
One of the most fascinating things about health apps is the process of selecting them: defining the need, determining how to search and which search terms to use, deciding which to consider, and deciding which to try. Having thought a lot about health app search, I was thrilled to have an opportunity to talk about the broader issue of mobile health search in a session at APHA12 on health information seeking.
My presentation first argued that it is almost impossible to focus only on laptops and desktops when considering health information seeking given the preponderance of mobile devices. I then talked about what mobile devices provide health seekers:
- Immediacy and access
- Affinity
- Multiple methods of input/output
- Context
My slides are posted here. Many thanks to Susannah Fox and John Mangano for sharing Pew and Comscore data respectively.
Intimate Partner Violence Screening: Why It Is Inconsistent and How It Can Be Improved
I was curious why Lahey Clinic, a nonprofit group practice outside of Boston, started asking patients, “Are you safe at home?” during intake. Trying to find this out turned into an exploration of the inconsistent state of intimate partner violence screening in the US.
“Are You Safe At Home?”
The first time I was asked “Are you safe at home?” during patient intake at Lahey Clinic, I was surprised that such a personal question was asked in such an impersonal way – by a healthcare professional hunched over a laptop and not making eye contact with me (which inspired a blog post on the role of eye contact in physician-patient communication). It seemed like the only purpose of the question was to check a box on an online form to show that they had screened for intimate partner violence (IPV), the au courant term for domestic abuse. When and why was “Are you safe at home?” added to Lahey’s patient intake process?
Finding the answer to my questions turned out to be surprisingly elusive:
- When was “Are you safe at home?” added to patient intake?
- Is it used for all ages and genders?
- Is the question included in the EMR?
- Is it required by law or by accrediting agencies?
- Why was IPV screening added to patient intake?
- Who asks the question and what training are they given about how to ask? Are they screening for IPV in other ways?
- What wording and method of asking is most effective?
- What protocols are in place if a patient answers in the negative or reacts with a response other than “Yes”?
- Has data been collected on the answers and on the actions taken, or on the impact on detecting IPV?
I became interested in the answers, not just for Lahey, but for all hospitals and doctor’s practices.
IPV Screening May Be Required for Hospital Accreditation
I asked a nurse practitioner at Lahey Clinic, who said “Are you safe at home?” was added about two years ago and was asked of both men and women. She thought it was required as part of The Joint Commission’s (JCAHO) accreditation process and that when Lahey is up for review they need to show that all patients were asked. The nurse practitioner said that she did not know of a formal protocol if a patient said they were not safe at home and would have to decide on the spot to notify the police or social services. She further said that some patients get angry when asked because they see it as an invasion of privacy, and she speculated that these strong reactions might indicate a problem.
I learned more about JCAHO, which certifies hospitals and other medical facilities based on adherence to quality standards. Lahey was last accredited in November 2011, and the full report is available as are the accountability measures, which focus on patient safety initiatives, but not on IPV (that I could find). The results from the Survey of Patients’ Hospital Experiences were also available. (Since this was more recent than what was reported on Lahey’s site, I wondered if people actually check hospital survey results or for JCAHO accreditation. My curiosity led me to How to choose a hospital where JCAHO was listed as one of four other sources of information about hospitals to check besides Consumer Reports’ own ratings). Lahey’s commitment to IPV goes beyond the screening question, as indicated by their provision of Domestic Violence Resources as part of patient information and their Domestic Violence Initiative. Other Greater Boston hospital websites I looked at did not provide this information or it was more buried in their site.
Government Agencies Recommend IPV Prevention and Screening
JCAHO’s website led me to patient safety initiatives from The Agency for Healthcare Research and Quality (AHRQ) and to an Institute of Medicine (IOM) report, Clinical Preventive Services for Women: Closing the Gaps, that recommends to the US Department of Health and Human Services that women’s preventive services include screening and counseling for interpersonal and domestic violence in a culturally sensitive and supportive manner.
As early as 1992, the American Medical Association (AMA) issued non-binding guidelines that advised doctors to routinely question female patients about domestic violence and that they should consider the possibility of domestic abuse if patients provided “unlikely stories for how sustained an injury.” The guidelines addressed the actions a physician should take before the patient leaves the office. More recently, in November, 2007, AMA Policy E-2.02 Physicians’ Obligations in Preventing, Identifying, and Treating Violence and Abuse was adopted. It included the identification, treatment, and reporting of abuse and mentions the need to extend this to emotional abuse or neglect and to “patients who do not belong to population groups that are traditionally believed to be at risk of abuse”. Specifically, it said that:
Physicians should routinely inquire about physical, sexual, and psychological abuse as part of the medical history. Physicians should also consider abuse as a factor in the presentation of medical complaints because patients’ experiences with interpersonal violence or abuse may adversely affect their health status or ability to adhere to medical recommendations.
Another AMA report that referred to the 2007 guidelines stated that “Research results indicate, however, a high rate of missed opportunities for patient identification in clinical settings.”
About 25% of Woman Are Victims of IPV at Some Time
Amy LaVertu, MLS, an Information Services Librarian at the Hirsh Health Sciences Library at Tufts University, conducted searches to help me with my IPV research. (The use of multiple terms, including intimate partner violence, partner violence, domestic violence, and domestic abuse, made searching more difficult for both Amy and me.) Amy found out about the mandatory reporting laws that some states like California have that require health practitioners to report any known or suspected abuse but do not specify screening processes. Amy also found data about the incidence of IPV; US Preventative Services Task Force (USPSTF) reported, “It is hard to know exactly how many women experience IPV because it is not always reported. However, it is thought that between 1.3 and 5.3 million women experience IPV every year. About 25 percent of women experience IPV at some time during their lives.” This highlighted the extent of the problem as well as the need for consistent reporting, and made me yet again wonder what happens to the screening data from Lahey and other institutions.
IPV Screening Takes Many Forms
The recommendations about screening did not specify the wording or timing of screening. Through searches I located many patient intake forms that included the question “Are you safe at home” One was from Fenway Health in Boston, so I contacted Chris Viveiros, a former student, who is Fenway’s Associate Director of Communications. Chris found out from his colleagues that the online form “isn’t Fenway’s actual patient intake form. ‘The Fenway Guide to LGBT Health’ is a medical textbook that Fenway produced and published in conjunction with the American College of Physicians and the form was included in that textbook as a model form that others can adopt.” Chris checked with Fenway’s medical and behavioral health departments, and found that neither department includes that question on their patient intake form. Fenway’s Violence Recovery Program coordinator elaborated, “The Behavioral Health forms actually ask a series of questions about potential partner abuse developed from the screening tool the Violence Recovery Program uses to assess domestic violence.” Instead of “Are you safe at home?”, for over five years they have used a series of direct questions about what a person may be experiencing.
Another former student, Niranjan Karnik, MD, PhD, said that the recognition in the 1970s and 1980s of domestic violence as a public health issue is what led to the interest in screening. He guessed that each hospital creates their own intake forms, and pointed out that at University of Chicago Medicine, where he practices, “there are different intake forms for each clinic or department. In psychiatry we do not ask this question in this form; instead we tend to screen for childhood abuse as well as present abuse under the general rubric of past psychiatric history or social history.” Niranjan summarized my pursuit perfectly, saying “One over-arching issue to consider is how decentralized and fractured the US health care system is so that there is not one answer to these questions but many depending on individual institutional histories.”
Evidence That IPV Screening Works
Wanting to learn more about the accuracy, efficiency, and acceptability of screening processes, I read a systematic review update of the USPTF’s report on IVP screening in the Annals of Internal Medicine that states:
In conclusion, screening instruments designed for health care settings can accurately identify women experiencing IPV. Screening women for IPV could reduce IPV and improve health outcomes depending on the population screened and outcome measured, although effectiveness trials have important limitations. Screening has minimal adverse effects, but some women experience discomfort, loss of privacy, emotional distress, and concerns about further abuse.
Since I had initially been concerned about eye contact when screening, I was particularly interested in the comparison of delivery methods; the review stated that “higher rates of IPV disclosure resulting from self-administered methods than face-to-face questioning. Computerized screening increases rates of IPV discussion, disclosure, and service provision and is more acceptable for patients.” I wasn’t sure how these results fit with the findings in a JAMA article on the effect of computerized screening for partner violence on physical and mental health that concluded: “Among women receiving care in primary care clinics, providing a partner violence resource list with or without screening did not result in improved health.” Clearly more research needs to be done on screening effectiveness. I further wondered if any research on screening methods looked at the research reported in “The Media Equation: How People Treat Computers, Television, and New Media Like Real People and Places” by Byron Reeves and Clifford Nass, “The Man Who Lied to His Laptop: What Computers Can Teach Us About Human Relationships” by Clifford Nass, and other research on how people relate to technology.
What Helps People Who Are Being Abused?
When I spoke to Libby Bradshaw, DO, MS, my colleague in the Department of Public Health and Community Medicine at Tufts University School of Medicine, she focused on what most helps people who are being abused. As an ER physician, Libby used the Transtheoretical Model of Behavior Change (TTM) to assess which stage the person was at. (The five stages of change are precontemplation, contemplation, preparation, action, and maintenance.) At the precontemplation stage, she said, one can raise awareness and help people identify themselves as victims. Libby would say to someone she suspected was a victim of abuse, “I’m concerned about your safety and anyone’s safety who has injuries like yours” to open a door to disclosure. Another colleague, Marcia M. Boumil, MS, JD, LL.M., agreed with Libby and talked about the value of deflection and repetition. Both Libby and Marcia said that it is important to be sensitive to sending someone home with literature and that a wallet card is often better than something larger.
Tara Montgomery, Director, Health Partnerships & Impact at Consumer Reports, sent me The Minnesota Center Against Violence and Abuse paper, Building Bridges between Domestic Violence Advocates and Health Care Providers, which promotes collaborations between domestic violence advocates and health care providers that answer questions including: “Will this program or policy make battered women safer?” and “Will this program or policy make all women safer?” (The paper, written in 1999, uses terminology, like “battered women”, that is rarely used today.)
IPV Prevention and Screening
We have moved beyond the notion of “battered women” to include both physical and emotional abuse and to acknowledge that this is a public health problem that crosses all boundaries and must be taken seriously because, as Libby pointed out, victims of abuse have been killed. Many organizations are focusing on prevention, notably Healthy People 2020, which includes, as developmental objectives, the reduction of physical violence, sexual violence, psychological abuse, and stalking by current or former intimate partners.
A component of prevention is increasing awareness, which, as I learned through my research, is being done through traditional approaches (posters, flyers on bathroom stalls, brochures, and wallet cards) and more recent ones (websites, social media such as CDC’s VetoViolence campaign on Facebook, app challenges such as Ending Violence @ Home, Teen Dating Violence Awareness Month, and Domestic Violence Awareness Month). Libby was on the board of directors of Jane Doe Inc., The Massachusetts Coalition Against Sexual Assault and Domestic Abuse. Their website has a “Leave this site quickly” tab, acknowledging that someone viewing the site might not be in a safe situation, and extensive information on how to find help. While some of the site is focused on women, they balance the need to be inclusive while being specific enough to provide helpful services.
I returned to Libby’s excellent point about what best helps victims of IPV reach and move past the precontemplative stage of TTM to the action stage. From what I learned from Niranjan about University of Chicago Medicine, from Chris about Fenway Health, and from the nurse practitioner about Lahey Clinic, it seems that the use and wording of a screening question is based on, as Niranjan put it, “local practice and perceived needs”. Everything I learned leads me to believe that more standardized, evidence-based processes screening processes are needed. If screening instruments work, as the Annals of Internal Medicine review found, then what is the best wording to use to elicit a disclosure and the best delivery method (and does eye contact increase disclosure)?
Could more standardized screening processes lead to better reporting? The many constituents, including JCAHO, AMA, USPHS, CDC, hospitals, advocacy groups, and providers, differ in their goals and how they shape practice patterns. (I would like to make a flow chart showing where IPV decisions are made and the paths through which they reach institutions, health care providers, and patients.)
“We Do Not Have the Ability to Know Everything”
Niranjan said, “Invariably organizations are forced to make choices and what to ask and how much to dig because we do not have the ability to know everything. Who makes these choices about what is on a form is often less clear, and that opacity is what you found along your journey. A clerk may be tasked with creating a form, or a committee of physicians and nurses. There is little in the way of standard of practice for the development of medical infrastructure (I use this term in the broadest sense to include forms, apps, programs, charts, physical space and technology), and yet there is so much of the outcome that infrastructure determines.”
Healthcare professionals have a unique opportunity to identify IPV early to break the cycle of physical, psychological, and sexual violence. Requiring IPV screening in all states and all hospitals and doctor’s practices is a huge step in the right direction. But, in the spirit of evidence-based medicine, more research must be done to determine the specific IPV screening procedures and protocols that are most effective in detecting IPV and helping victims of abuse.
How the FDA Approves Drugs: My Role on the Arthritis Advisory Committee
Behind the headlines “FDA Panel Unanimously Rejects…” and “Arthritis Pill From Pfizer Wins Support…” was, for me, over 600 pages of reading and two days at the FDA as the Consumer Representative to the Arthritis Advisory Committee (AAC). These were my first meetings following an almost yearlong process that started with a nomination by Diane Aronson, the Consumer Representative whose term was ending, and culminated with my four year committee appointment. The FDA has many advisory committees consisting of outside experts who provide the FDA with independent opinions and recommendations on applications to market new drugs. As Consumer Representative, my role is to represent the consumer perspective on issues and actions before the FDA AAC.
The first meeting was to review Regeneron Pharmaceuticals’ Arcalyst, also known by its generic name rilonacept, for short-term use to treat gout, a form of arthritis. It was already on the market to treat a rare disease, Cryopyrin-Associated Periodic Syndromes. The second meeting was for Pfizer’s tofacitinib, which was under review for treatment of rheumatoid arthritis. Tofacitinib had quite a bit of press preceding this meeting, mostly focusing on it being a “potential blockbuster, with peak sales of $2 billion to $3 billion a year, if its benefits are deemed to outweigh the risks”.
The most grueling part of preparing for the meetings was reading the materials including clinical trial results from the pharmaceutical companies, who are called the sponsor, and from the FDA, who is called the agency. As I read, I focused on understanding the efficacy and safety of the drugs, and their impact on quality of life. I had many questions, some of which were answered in the documents, and some that I made note of to ask during the meetings.
Regenron’s rilonacept for gout
The May 8 meeting took place at the FDA White Oak Campus, where we had to go through security before going to the meeting room, which was largely empty. The front was roped off for the committee, who sat at a U-shaped table where name tents and folders were waiting for us. The sponsor, Regenron, had rows of chairs on one side, and the agency did on the other side. On the agency side there were people in military uniform, but I never found out who they were. When the meeting started, the process was very formal, with parallels to court although, carrying that analogy further, it wasn’t clear whether we were the judges, the jury, or both.
The meeting was presided over by Lenore M. Buckley, MD, MPH, the committee chair, and Philip Bautista, PharmD, the FDA’s Designated Federal Officer to the AAC. They started by summarizing the meeting agenda and instructing everyone on the protocols for speaking. Each committee member had a microphone with a talk button and yes-no-abstain voting buttons. It was an open meeting, with the public and press sparsely represented, and a live webcast.
The morning consisted of the sponsor’s presentation, followed by the agency’s presentation, each with time at the end for our questions. I was struck by how the sponsor had prepared slides for every anticipated question, all pre-loaded so readily available. I wondered about all the slides we weren’t seeing, and the questions we should be asking but hadn’t. The sponsor also brought experts, who all started by stating their financial involvement with the sponsor and if they benefit from the outcome of the meeting. I was struck by some of the differences between the language used and points made by the sponsor and the agency, including the sponsor’s use of “benefit risk profile” and the agency’s use of “risk benefit profile”.
Following lunch, any member of the public who registered in advance could make a statement. We had some letters in our packets from patients, patient advocates, and physicians that related to rilonacept or, in one case, to men’s health issues, since gout primarily affects men.
Once all sides had been heard, the agency posed their questions to the committee, some for discussion and some for vote. We had further opportunities to ask questions and many of them pertained to the risks. Once votes were captured for each of the three votes, the tally of the votes was displayed and then a table of how individuals voted. The chair asked every panelist to state their name, how they voted, and the reason. The stated reasons seemed to be the primary sound bites captured by the press, especially for the final vote, if the efficacy and safety data supported approval of rilonacept. The committee voted unanimously against approval; I later learned that unanimous votes are rare.
Pfizer’s tofacitinib for rheumatoid arthritis
The second meeting, on May 9, was very different from the first, starting with longer security lines when we arrived in the morning. It was an open meeting with a live webcast again, but this time the auditorium was packed, with a row of press and more patients and patient advocates, including one who I knew from Twitter, Kelly Young. There was a large contingent from Pfizer. One my fellow panelists had told me to expect far more people than the prior day because our vote has much greater financial impact, since this was potentially a blockbuster drug with projected sales of $2 billion to $3 billion a year.
The agenda was similar to the previous meeting. Pfizer presented and, like Regeneron, brought outside experts. Pfizer had many slides in addition to those used in their presentation to answer our questions. Clearly a lot of effort went into anticipating our questions, preparing slides, and indexing them to be able to locate them quickly in response to a question.
I was more confident asking questions than I had been at the first meeting because I better understood the process. I asked Pfizer to elaborate on the safety profile of the longer term clinical trial data regarding the two dosing options, 5 mg and 10 mg, evaluated in the clinical trials. I also asked them if they had plans for patient education and they showed a slide about Dear Doctor and Pharmacist letters which did not answer my question. There was some additional discussion about the efficacy and safety of smaller doses.
The final vote was 8-2 in favor. Many who voted yes urged further research about some of its side effects, concerns that largely didn’t make the headlines. The New York Times accurately reported that we “urged the Food and Drug Administration to require rigorous follow-up studies.” Like the previous meeting, the final vote was only a recommendation to the FDA; as stated in the New York Times, “the agency, which is scheduled to decide on approval by August, usually — but not always — follows the advice of advisory committees.”
A public process for patient safety
The meetings were fascinating and I appreciated the public nature of the process, including making all materials available to the public before the meeting, opening it to the public in person and through streaming, and providing time for people like Jan Wyatt, RN, PhD to speak. I saw the meetings as a milestone in a long chain of events that started with years of research and clinical trials. The meetings were not the end since the FDA needs to make decisions based on the AAC recommendations and then work with the sponsors on their next steps to further ensure efficacy and safety.
I am honored to be part of this committee. Most of all, I have the deepest respect for the professionalism and knowledge of my fellow committee members, the agency, the sponsors, and the public who participated. Together I believe we have the shared goals of bringing new treatments to patients without compromising safety.
Must Waiting Be Inherent To Medical Care?
“By the time you see the doctor, you’re either dead or you’re better,” my mother-in-law told me. She had to have multiple tests, all with long waits to get the appointments and the results, before her health insurer would allow her to make an appointment with a specialist.
“Waiting is the bane of the medical system,” a former student, an R.N., concurred. Advances in medicine and technology have improved medical outcomes, but have often resulted in more waiting at a time when every other aspect of life is speeding up. Waiting is a systemic problem exacerbated by advances in medicine and by health care reform.
Some of the ways we wait:
- Wait to see if the symptoms go away or get worse. We all struggle with these decisions: do we need to be seen about the fever, back pain, or rash? Sometimes we wait because of denial or hopelessness; sometimes because of the cost or availability of medical care. I make decisions about when I need to see the doctor by asking myself if, under the same circumstances, I would take one of my children to the doctor.
- Wait to get an appointment scheduled. I’ve made appointments for a sick child by channeling an old friend who could be relentless: “That is not acceptable. I need an appointment today.” Obnoxious but it sometimes worked. The rest of the time, though, the period between making and having an appointment can feel very long.
- Wait to get to the appointment. Doctors and hospitals are more abundant in Greater Boston, where I live, than in other places, although traffic and parking can be problematic. Melody Smith Jones described a man’s six hour commute to see a doctor.
- Wait to be seen by the doctor. It isn’t called the waiting room for nothing. Dr. Atul Gawande wrote in The Checklist Manifesto about people in the waiting room getting irate when he was running two hours behind on a hectic day. Being irate – or anxious or bored – is unlikely to increase the quality of physician-patient communication.
- Wait in the examining room. At least in a waiting room you are dressed. If it is cold and you are wearing a paper or cloth johnny, distractions don’t work as well and examining rooms have fewer than waiting rooms.
- See the doctor. Nowadays, as my mother-in-law recounted, you have to wait for the doctor to review your records before even looking at you. I find it surprising that physician rating systems give equal weight to wait times as they do to “communicates” and “listens”, when the latter are so much more important.
- Wait in the lab. The selection of magazines is skimpier. You may be reviewing what you were told not to eat or drink: will that cup of black coffee skew the results?
- Wait for lab results. If there are any non-routine reasons for testing, this can be interminable. I leave a lab asking when results will be ready and then I call. A former student told me about using Harvard Vanguard’s MyHealth Online. She said, “I love getting the lab results immediately online but I can see how those without clinical training could be overwhelmed or confused by the data and how to interpret them.”
- Wait for the doctor’s interpretation of lab results. Lab results can be hard to decipher without clinical training, as my student said above. Even when I know results are available and the doctor has seen them, it can take many phone calls to obtain the doctor’s message via the secretary. Asking the doctor follow-up questions takes even longer. These are waits with a cell phone never turned off so you don’t miss the call.
- Loop. You think you’re done but you may need to see a specialist, get a second opinion, or have more tests. As my mother-in-law pointed out, this process can be controlled more by insurance companies than by doctors’ availability. Another type of waiting also takes place now: waiting to get better. A friend bemoaned how she “couldn’t wait” for her black eye resulting from a fall to clear up because she was tired of people staring at her.
Waiting Reduction
We all have to wait. Waiting is an inherent part of being ill. But here are some ways to reduce wait time or lessen the impact:
- Schedule tests and doctor’s appointments together. My exercise teacher told me about her husband’s hospital visit that started with a CT scan and ended with a doctor’s appointment to discuss the results. With no problems detected and a year until they next visit, they both said what a relief it was to get it over with quickly. Scheduling appointments together reduced both waiting time and anxiety, although not all tests results can be interpreted this quickly. Personally I find it is much easier to deal with a diagnosis than fear of what a symptom could mean.
- Avoid unnecessary appointments through email or phone. A Dutch friend, whose sister and aunt are doctors, recounted instances when she was able to get quick answers by email or phone to questions, be reassured, and save a lot of time and effort. One instance: “Once I was on holiday in Greece and sent my sister a picture when my eye was infected. She told me to buy drops and that it would go away.” Since most people do not have convenient relatives with medical degrees to talk to, being able to easily reach a doctor or nurse by email could provide a way to get a quick answer. Dr. Danny Sands has long been a proponent of physician-patient email, but most practices do not support it. I can easily see the benefits because email forces you to describe a situation concisely and images can be attached as appropriate.
- Meet Dr. Skype. Melody Smith Jones posed the question, “Can telehealth be used to end this man’s 6 hour commute by providing him access to the specialists he requires? What barriers and challenges still lay before us to make this a reality?” Dr. Joseph Kvedar answers this, saying “We have to move beyond the antiquated notion that you must visit a physical space and talk real-time with your health care provider to fulfill the process of care. Seamless communication between you the patient and the system (including your provider but also your health information) will allow us to cut through what is a falsely complex and inefficient system to achieve more efficiency, less waiting and less anxiety.”
- Ask the expert. Self-proclaimed experts and community-verified experts provide advice in many sites like Yahoo! Answers. Recently there has been a proliferation of sites supporting health Q&A. A new entry, HealthTap, promotes that it has “Answers from 5,000 U.S. licensed physicians. No waiting room.” I tried it and questioned why I needed to answer so many personal questions during the registration process. Once registered, I started to ask a question but was stumped by how much context to provide. In general one of the things I like about Ask the Expert is the ability to browse other people’s questions – sometimes you learn more from questions you never would have thought to ask – and answers.
- Use clinics for non-urgent care. I had a friend who believed that it was important to see the same doctor because he or she could notice changes that might not otherwise be detected. While I agree, the Minute Clinic (note the name) model can potentially reduce some of the use of doctors for non-urgent care.
- Enhance health literacy skills. With 80% of US internet users looking online for health information, better health literacy skills are needed to guide the strategies used to seek, select, and use online health information. This is rarely taught in schools or by doctors, and is increasingly necessary because of the lower barriers with social media: it is easier than ever to promote herbal supplements and bad advice.
- Make waiting fun – or at least less stressful. Deirdre Walsh, a health coach and a former student, said, “The pain and frustration of endless waiting seems needlessly cruel. But it’s often the emotional toll of fear and uncertainty that does the most damage from the negative effects of stress chemicals on energy, sleep and mood. If waiting is inevitable, there are self-awareness exercises that restore calm, power, and the sense of control. ” Games and gamification have potential as well: a version of “Wait, wait… don’t tell me!” for the waiting room?
- Is there an app for that? Not that I know of, but social media is being used by public health departments to post flu clinic waits and by emergency rooms to post wait times. What about for doctor’s visits? Dr. Richard Besser said, “You shouldn’t have to wait more than 15 minutes unless there’s an emergency. Social media might be a great place for people to share waiting times.” Along those lines, I read about, but have not tried, WaitChecker, a web-based service to alert patients to appointment delays.
- Set expectations. The metaphor Trisha Torrey uses is “when you arrive at a busy restaurant on a Friday night, what’s your question to the host? How long is the wait? It’s only fair that providers manage our expectations about wait times, too.” It is easier to be patient with expectations set, not just for the length of a wait but the course of a disease.
- Use waiting time on task. A student once told me that she had a rash when pregnant and assumed it was unrelated to her pregnancy. She searched for information on her iPhone while in the waiting room, decided it might be related after all, and asked her doctor, who treated it. She saved another doctor’s appointment. What if all waiting rooms provided mobile devices? Or promoted prevention with education, exercises, and healthy snacks. Talk about captive audiences.
Quality of Health Care Is Paramount
It is important to maintain perspective: quality of health care is paramount. Everyone wants the best care possible and sometimes waiting is unavoidable. With no health advantages to waiting, put , as Dr. Ted Eytan said, “the patients’ cost of care, which includes the time they spend waiting, into the equation. Everything follows from that.” There is no reason to accept that it’s part of our health system, but, instead to work to reduce waiting, and to reduce the impact of waiting.
Avoiding Fraudulent Health Websites Through Reviews
Given the difficulty healthcare consumers have in locating useful and reliable health information, I took note of SiteJabber.com both because of their model of website reviews and because they are supported by a grant from the National Science Foundation. I interviewed Jeremy Gin, their CEO and co-founder, who calls SiteJabber a consumer protection service that helps people avoid fraudulent websites, find good sites, and contribute reviews. The site has information on over 100,000 websites, including 6403 health sites, and is visited by over 400,000 consumers every month. They were named one of the top 100 websites of 2010 by PC Magazine.
Lisa: Health website quality is arguably more important than any other type of site. How does SiteJabber address quality issues?
Jeremy: We certainly share your concern about the quality of information available to consumers on the quality of healthcare sites. Our role is publishing community reviews on the quality of healthcare sites, and our own data gathering and surfacing of useful information that might not be easily available to consumers. In terms of the quality of information on SiteJabber, we go through great efforts to limit the impact of spam on our site through technology, administrative review curation, and community review curation.
Lisa: Do you ever ask people to review sites or have people on staff doing reviews? Many health sites seemed to be reviewed by one person, Rod G.
Jeremy: Most of our reviews come from Online Consumer Advocates. These Advocates are typically possess a wide-range of expertise—think modern-day Renaissance men and women—and care deeply about helping other consumers and making the internet a better place for everyone. We are very thankful and lucky to have a number of these individuals who have dedicated a large amount of their time to supporting our cause. While we do not pay reviewers, Rod G. is one of our co-founders and an MD, so has written a number of reviews of health sites. In the coming months, we will be inviting more healthcare experts (MDs as well as others) to review sites. Right now we have a “reviewer level” system which lets readers know the relative trustworthiness of reviewers. We’re also about to introduce a more robust system which will incorporate authority specific to healthcare.
Lisa: Why do you show the HONcode logo for some sites? I ask this because so many healthcare consumers don’t know what it is. Do you think it adds credibility?
Jeremy: In the health field, we believe HON Seals provide useful information. For those who haven’t heard of it, it is a non-profit based in Switzerland which vets healthcare sites for information quality, conflicts of interest, etc. However, I would point out that HON Seal information is offered only as a data point to consumers, not the ultimate judge of a website’s quality. For example, sites such as Psychcentral and Dailystrength are HON certified but our reviewers have brought up legitimate issues with these sites that we believe consumers should be aware of as well.
Lisa: Do you like controversy in reviews, such as those on Quackwatch, which is one of the few health sites I found with multiple reviews?
Jeremy: Controversy is not something we seek out—our chief concern is providing transparency and useful information for consumers—but sometimes controversy finds us, in which case we do our best to keep the discussions focused on giving people something useful to read.
Lisa: How does social media fit into your model? I see you use Twitter and Facebook, and have a blog as well.
Jeremy: Social media has been important to us in the past and will be increasingly important going forward. We use our blog to communicate broadly with our community and the general public; so if we notice an emerging scam we can let everyone know, or if we come up with some tips for consumers in a particular subject (like health), we can post those as well. We also publish illustrative graphics on topics we believe are important to consumers, such as the counterfeit pharmaceuticals trade. Blog posts are broadcast through our Facebook Fan Page and Twitter account and often syndicated by The Atlantic, Fast Company, and AOL’s Consumer Ally so they can reach more than our usual base of visitors. In addition, our reviewers can use their own Facebook and Twitter accounts to broadcast their own reviews. We’re presently working on a deeper integration of social media so our reviewers can make their SiteJabber experience an extension of their Facebook experience, if they so choose.
Social Media Metrics for Healthcare
Metrics show which approaches are successful and justify the expenditure. Social media metrics are tricky because obvious ones, such as numbers of fans and followers, may not be the measures indicating success at achieving goals.
Jennifer Schmidt, in Social Media and Health, did a class project on Social Media Metrics for Healthcare in which she identified the four most effective metrics to measure, brand mentions/sentiment; activity ratio; engagement duration; and loyalty. Learn what these are and how to measure them in her paper, Social Media Metrics for HealthCare and slides, which close with the apt and powerful message:
Develop a message, create an audience, analyze, adjust, and engage.
The Art of Running a Twitter Chat: Lessons from Dr. Richard Besser and ABC News
I learned that Dr. Besser runs a weekly Twitter chat on Twitter, of course: @drrichardbesser: Reminder: Twitter chat today #abcDrBchat 1PM ET Are you prepared for a disaster? Let’s talk about it. @ABC
For the uninitiated, this translates to: Dr. Richard Besser, chief health and medical editor of ABC News and former acting director of the CDC, is running a Twitter chat about disaster preparation.
I participated in the chat because disaster preparedness was on my mind after being interviewed earlier in the day about how social media is being used in Japan and because I follow Dr. Besser and wanted to see how he conducted his chat. I participate in the weekly #hcsm chat when I can and lurk in others, so it’s fascinating to compare moderation techniques. The chat, by the way, was lively, informative, and well-attended. My personal highlight was when Dr. Besser retweeted me and then @ABC retweeted him!
I was in my office at Tufts School of Medicine and the door was open, so colleagues came by and enjoyed looking over my shoulder (they fell in the uninitiated category and were uniformly impressed that Dr. Besser wasn’t). After the chat ended, I contacted Dan Childs, aka DanChildsABC, who heads the Health section of ABCNews.com, to ask how Dr. Besser’s weekly chat started, how it is conducted, and what happens after the hour is over.
Lisa: Who had the idea to start the weekly chat with Dr. Besser?
Dan: This was actually an idea that was hatched during a discussion between a few of us on the Health team and Niketa Patel, the Social Media Producer for ABCNews.com. We had wanted to do something special that would allow Dr. Besser to connect more directly to his audience through social media, and Niketa offered up this idea. This is the first such effort for a correspondent here at ABC News, so we’re the trailblazers in a way. Or the guinea pigs, depending on how you look at it. Trailblazing guinea pigs.
Lisa: Did he like the idea?
Dan: Dr. Besser loved the idea.
Lisa: This was my first chat with Dr. Besser but I see there is another next week. When did they start?
Dan: Today was our fourth Twitter chat so far. We started about a month ago.
Lisa: How are topics selected?
Dan: Generally, the chat crew will share ideas either in a meeting or online. As with the chat today about disaster preparedness, we try to pick topics that are in the news and, therefore, within the public consciousness. Last week, Dr. Besser tweeted from Africa on issues of global health in the developing countries there. We try to pick something that is relevant, but also gives participants a feeling of going beyond the headlines to explore how these current issues are relevant to them.
Lisa: I was very impressed that Dr. Besser was supported by @LaraSalaABCNews, @BigCityRig, @CarrieHalperin, and @DanChildsABC. What actually happens during the chat?
Dan: Several members of the chat crew set up laptops in Dr. Besser’s office, while others of us participate from our offices and desks. Certain members of the chat crew will be responsible for certain aspects of the chat; one may be tasked with presenting questions during the chat, while another will be in charge of scouring ABCNews.com for articles that are relevant to the discussion at hand and posting those links. It is also usually helpful to have one or two people navigating various external sources on the web to ensure that all tweets we put out are based on the most current and reliable information available.
Lisa: What happens after the chat to review how it went? Who is there and what is the discussion? Are there noticeable changes the following week?
Dan: This is generally a discussion that takes place in the course of our Health team morning meetings, and then more informally throughout the day as we think of the things we learned from the previous chat session. What is great about this whole process is that the product has evolved pretty much constantly since its inception – every time we do this, we do at least one or two things a little bit differently. Sometimes these adjustments are small ones, probably barely noticeable to our audiences. But then there are larger changes that really seem to have an impact. In our most recent session, for example, we were able to coordinate with ABCNews.com to have the tweets appear in real-time in a text box on the Home Page and the Health page of the website. So when something like that happens, where the rest of the eyes in the network can see what you’re doing and how you’re interacting with the audience, that’s pretty exciting.
End of Life Decision Making
End-of-life decision-making is an increasing pervasive topic that has personal, political, legal, and, of course, medical implications. George Lundberg, MD said that “every American deserves the right to choose to have a death with dignity and as pain-free as medical science and practice can provide. To achieve that, patients and physicians must discuss the options for managing an upcoming death.” Atul Gawande, MD wrote in Letting Go: What should medicine do when it can’t save your life?, “But rarely is there nothing more that doctors can do. They can give toxic drugs of unknown efficacy, operate to try to remove part of the tumor, put in a feeding tube if a person can’t eat: there’s always something. We want these choices. We don’t want anyone—certainly not bureaucrats or the marketplace—to limit them. But that doesn’t mean we are eager to make the choices ourselves. Instead, most often, we make no choice at all. We fall back on the default, and the default is: Do Something. Is there any way out of this?” Gawande told about La Crosse, Wisconsin, where, by 1996, 85% of residents who died had written advanced directives.
La Crosse is the exception. Rational, informed decision-making is difficult; most people don’t know much about advance directives and don’t have good resources to learn about the many facets of end-of-life decision-making. Enter Mardi Coleman, a Master of Science candidate in Health Communication at Tufts University School of Medicine. With a background in geriatric mental health and an interest in how healthcare can meet the Institute of Medicine’s aims for a system that is efficient, equitable, effective, timely, patient-centered, and safe, she designed a end-of-life decision-making website in Online Consumer Health. The overarching goal of the website, as described in her final paper, is “to provide information that allows users to make informed end of life legal, medical treatment, and service decisions,” specifically to:
Help users clarify their understanding of their beliefs and values regarding end of life, treatments, and services, including that beliefs and values are situational and change over time.
Provide the types of information users need or want regarding advance directives, life-sustaining treatments, and services that extend or support the end of life in order to make informed decisions.
Engage first-time users and invite reuse because the website is attractive, well laid-out, and easy to use, and contains information that is relevant across many stages of decision-making.
Redesign of the Benson-Henry Institute for Mind Body Medicine
While being part of a well-known and reputable organization can have many benefits, not having a visual identity can be a liability on a website intended to help people. This is the case with the Benson-Henry Institute for Mind Body Medicine at Massachusetts General Hospital, whose website provides little information without exploring. Claire Berman, who is working on a Master of Science in Health Communication at Tufts University School of Medicine, was a student in my Online Consumer Health course and, for her project, redesigned the Benson-Henry Institute (BHI) site. Her process included the development of personas, such as Paul, a 35-year
-old Newton, MA resident with a stressful job and a family history of heart disease, who is skeptical about complimentary and alternative medicine (CAM). Paul needs to understand immediately how BHI’s website may be able to help him when viewing he views it for the first time, especially because of his skepticism. Claire developed other personas, and showed that the current site design and structure is unlikely to appeal to them or provide them with the information they are seeking. With BHI’s goal to “improve the health status of site users through mind-body relaxation techniques,” Claire’s recommendations for a different look and content are likely to help them achieve their goals. Read Claire’s final paper, with personas who can benefit from BHI’s content and a competitive analysis looking at Gaiam Yoga, Center for Mind Body Medicine, Mind Body Medicine Center, and Mind Body Medicine.
Ask our Nutritionist: How Stonyfield and Other Websites Provide Nutrition Advice
Many food and health websites include the services of a nutritionist to answer consumer questions by email or on the site. Vicki Koenig, MS, RD, CDN is a Nutritionist who works for Stonyfield Farm and one of her responsibilities there is responding by email to “Ask our Nutritionist” questions. Vicki receives between 40 and 70 questions a month and answers them all individually, although for some she peruses her archive of her previous answers, which is categorized by topic, and the articles she wrote for the site. The most common are gluten-free, diet, and probiotic questions. People are also interested in where the milk comes from and how the cows are treated. There are many “off-the-wall” ones; the strangest of which was a request for a yogurt-covered dog biscuit recipe (which she found and sent). One of the most absurd was someone asking can your stomach explode from a food-eating contest (it can’t, Vicki assured me).
Despite their disclaimer (The information provided by our nutritionist is not intended to diagnose, treat, cure or prevent any disease or give medical advise [sic]. Always consult your family health practitioner before altering your health regimen) people ask Vicki questions that are out of the context of her role. There are many from people who are desperately looking for answers to serious health problems, and she refers them to sites like the American Dietetic Association or other profession organizations. For instance, someone recently wrote that she has lupus and wanted to know what to do, and Vicki provided links but not a personalized diet.
To ask Vicki a question requires a name and email address, which makes sense since she responds by email. There is also a picture of her with her daughters and a bio; both make her seem very human and welcoming. When I asked, Vicki said that she needed to update the picture since her children are older now and that a marketing person contributed to part of the bio. She emphasized that she is very human. She stated that she’s a health professional, working mom, business partner with her husband and a consumer too.
Vicki also answers some of the questions that arrive through Facebook especially if clarification is needed. She contributed to the FAQs on the website and wrote all the articles in the Healthy Tips Library. She doesn’t respond to Twitter. Vicki has her own Facebook page, which she uses frequently, and a less used Twitter account. Her private practice has a website as well, which links to her Stonyfield articles (but does not include an Ask the Nutritionist feature).
One of the things I was curious about, especially after learning the volume of questions Vicki gets, was why Stonyfield doesn’t promote Vicki’s Q&A more and why it is done as private correspondence as opposed to being displayed and archived prominently on the site. Stonyfield’s response was:
We agree that our Ask our Nutritionist is a valuable and beneficial feature for our consumers. We can and should do a better job at featuring some of the frequently asked questions that consumers raise as they relate to health through good nutrition and organic foods. We tried to address this by providing related topics in our Healthy Tips Library, as well as focus on key product attributes that Stonyfield can deliver i.e. DHA, Omega 3s, etc.
I looked at a few other food company websites: Del Monte and Lean Cuisine are two that offer a list of Q&A with a nutritionist. Del Monte’s features a picture and bio of their nutritionist and an uncategorized list of questions with the promise that a new one is answered weekly from those submitted. Lean Cuisine has far more questions which are selected from some of “the most popular ones” asked and categorized. While the topics make sense, not all categories are populated. Some of the answers include product promotion. There is no bio with the picture of the nutritionist and registration is required to ask a question. Both are easy to find from the home pages.
The Dana Farber Cancer Center website includes a categorized Ask the Nutritionist Archive. The questions and answered are very detailed and specific to cancer patients. They also include a first name, last initial, and city and state, making them seem more authentic.Like the Stonyfield site, they are hard to find (without doing a search).
The Massachusetts Department of Public Health has an Ask the Nutritionist blog, where the comment field is used to ask questions and the answers are included below the question. While not categorized by topic, they are scrollable and many are very detailed and specific. There is also a picture and name but not a bio of the nutritionist. The blog is hard to find from the Dept. of Public Health site.
Go Ask Alice, a website developed by Columbia University primarily for college and high school students, has a page of nutrition questions. While the people responding are not identified by name or picture, the site states that all questions are answered by a team including Columbia University health educators. Each question includes the date originally published and the date last updated/reviewed and ends with links to related Q&As.
Curious I searched a little more and found other examples. Some, like Meritus Endocrinology, have an extensive archive while Washington Hospital Center’s Ask the Dietitian has a short list of questions. All the ones I found archived questions, although without any identifying information or a date, and most made it easy to ask questions. Stonyfield is therefore unusual in not providing an archive of questions.
If I was redesigning the Stonyfield site, I would include Vicki on the home page and let people coming to the site know that she is available to answer questions because it is such a valuable service and one that benefits the company in the helpfulness of this service to those who manage to find it on the site. (Of course, if more people know of Vicki’s availability, then her services might have to be limited.) I would include Vicki’s most recent Q&A on the home page with a link to the archive as a draw. Finally I would include at least a partial archive of questions and answers and, like Go Ask Alice! would include a date, and, like Dana Farber, would include at least a first name, city, and state because it makes it seem more like it came from a real person. However none of the questions I looked at on the above sites were generic or seemed fabricated because of the level of detail. The archive could prove valuable since someone else might have a question that you didn’t think to ask but benefit from. While there is already an enormous amount of information available online, the credibility of a nutritionist and the easy to digest (not an intentional pun) format of a Q&A could only benefit Stonyfield and allow more consumers to learn from other people’s questions and Vicki’s answers.
Looking for Health in All the Wrong Places: What Can Health Website Design Learn from Online Dating?
Online dating is one of the most successful online businesses. They even have an ideal pricing model: people often pay more expensive monthly fees because they optimistically expect not to need the less expensive longer term charges. Since any online trend or success has implications for sites for other purposes, I was curious about the implications of the success of online dating websites for health website design. I contacted Mark Brooks, an analyst and consultant to the internet dating industry who runs the industry news blog, OnlinePersonalsWatch.com.
Lisa: What is the newest trend in online dating? Is there an online health parallel?
Mark: Niche dating sites are springing up for every imaginable niche. Support groups, similarly: whatever the illness, there’s a support group online, which can be of tremendous comfort and provide sharing of useful, life-saving information.
Lisa: Online dating is trying new approaches to matching people. What works best, in your opinion?
Mark: Personality profiling sites aim to go one step further than typical dating sites. Typical dating sites allow search. So you can find people who meet your wants and needs. But people don’t really know what they want, until they see it. Personality profiling sites like eHarmony allow people to ‘not fall in love with the wrong person.’ They do the hard work of fixing people up, and use the best information available today, on psychology, sociology, anthropology, a la matchmaking.
Lisa: Do you personally try out online dating sites?
Mark: I prefer meeting people in real life, at parties and through friends of friends. I love speed dating, parties, and meeting people in real life. I’m not so keen on internet dating. But I’m married, so I’m off the market.
Lisa: Which features do you like best in sites?
Mark: Personality profiling and webcam based dating, along with location-based services that help people find matches to people nearby them.
Lisa: Do you go online when you need health information? Can you recount a recent time – why you went online, what you found, and if you sought professional care?
Mark: I’ve not been ill, ever, really. But when I am, I’m heading online to check what my doctor tells me.
Lisa: What can online health learn from online dating?
Mark: I’d love to see a search engine that matches people with other people in support groups, like them. Same illness, same geographic area.
Safe Fish, Smart Baby: Fish Consumption Advice for Pregnant Women
I gave a talk at the MA Department of Public Health this week and started with a game called Hot or Not. I showed screen shots to get people’s instantaneous reactions, my point being that people leave a site if is not appealing. One of the sites that was considered very “hot” was Lu Xing’s beautifully-designed home page from her final project in Online Consumer Health at Tufts University School of Medicine.
Lu, a graduate student at Emerson College working toward a master’s degree in Health Communication, designed a site, “Safe Fish, Smart Baby: Fish Consumption Advice for Pregnant Women” that was motivated by “the fragmented information that pregnant women have received about the nutritional value and health risks associated with fish consumption resulted in confusion and misperceptions.”Lu’s aim for to “create a credible and professional website that provides clear fish consumption advice, fish coupons, and fish preparation skills for pregnant women, to help them make informed fish consumption decisions, so that they can have a smart and healthy baby.” Her paper describes the steps she took to design her site. Lu and I welcome your feedback on her well-written and insightful final paper.
A Website for the Management of Narcolepsy
Students in Online Consumer Health at Tufts University School of Medicine design health websites for a topic of interest to them or redesign websites for real organizations. Ellen Langhans, a graduate student at Emerson College working toward a master’s degree in Health Communication, chose the management of narcolepsy for her topic. Her goal was “to create a site for people who live with narcolepsy – both patients and their loved ones alike – to help them manage the disorder,” to provide timely information, and to help site members learn from and connect with each other to thrive. Her final paper details the process she went through, which included the development of four personas and a competitive analysis of four websites: two for narcolepsy, Narcolepsy Network and The Stanford Center for Narcolepsy, and two for diabetes management that had similar goals, Diabetes.com and Take Action. Ellen and I welcome your feedback on her excellent and comprehensive paper.
How to Conduct a Competitive Analysis
When you design or redesign a health website (or any other type of site), you increase the likelihood of success if your site is better than or different from anything else available. A competitive analysis is a systematic analysis of “competing” sites to learn from them.
I teach how to conduct a competitive analysis and assign it to my students in Online Consumer Health, which I teach in the fall at Tufts University School of Medicine. The Competitive Analysis Worksheet I give my students has been refined over time. One of my students, Claire Berman, gave me permission to post the competitive analysis she did of the Benson-Henry Institute Mind-Body Medicine (BHIMBM) at Massachusetts General Hospital. It is an excellent example of how much can be learned through this process.
How and Why Massachusetts General Hospital (MGH) Uses Twitter to Reach Patients
Mike Morrison tweets for Massachusetts General Hospital as @MassGeneralNews and for Massachusetts General Hospital for Children as @MGHfC. I met Mike when I tweeted about the Benson-Henry Institute for Mind-Body Medicine including @MassGeneralNews in my tweet and Mike immediately followed me. I contacted him to find out what his strategy is for Twitter use and what the benefits have been:
Lisa: Let’s start with the name: Locally we say MGH or Mass General and even the website uses all variations of the hospital name. How did you decide what to use for Twitter to be recognizable and searchable to locals and everyone else?
Mike: The name was a tough decision. MGH was definitely an option but outside of Massachusetts it doesn’t resonate. Beyond that it was a matter of pragmatism. Twitter limited the number of characters for our name and we definitely wanted “News” in the title so after that is was pretty much a foregone conclusion.
Lisa: Do you know anything about which MGH employees – or patients – are on Twitter?
Mike: We usually find out about patients, doctors, and staff on Twitter by seeing their tweets. Each time we’re followed by an account I like to take a good look at the profile to see if they are in one of those categories because I want to continue building that sense of community. We also occasionally remind our own staff about our presence through our internal weekly newsletter.
Lisa: Tell me about your background: what did you do before this and how did you learn to use social media?
Mike: After graduating from the University of Maine in 2005, I completed a post-college PR/Marketing internship at North Shore Medical Center in Salem, MA, close to my hometown. After 3 months I was hired at the Museum of Science (MOS) in Boston as a Publicist in the Media Relations department. I worked at the MOS for more than 3.5 years and loved every minute. Though I had originally joined Facebook in college, it was at MOS that I began to see its full potential as a professional communications tool. Along with my colleagues, I worked to launch both a Facebook “fan” page, as they called it before the most recent “like” change, as well a personal page for Cliff, the Museum’s triceratops fossil. I also helped to launch both the YouTube channel and the @MuseumOfScience Twitter page. The jump to social media communication, though conceptual at first, became a reality for us when the media industry began to severely cut staff. Many of those cuts came from Arts and Entertainment writers and reporters who helped us garner much of our publicity. It became quite clear to us that utilizing social media was an important practice.
Lisa: Explain more about why it was important and also how social media for a museum compares to a hospital?
Mike: Social media is important because it allowed us to connect with passionate Museum fans and communicate our news that, while perhaps not ‘big” enough for traditional press to cover, was important to them. We were also able to have a lot of fun. We ran contests for our Facebook fans and Twitter followers. The staff at MOS continue to come up with even better ideas for engaging fans. In terms of a comparison, both hospitals and museums need to listen and interact. At the hospital we have to ensure that we apply our high standards of patient privacy to our social media practice. Though I didn’t realize it before I arrived, MGH’s world-class research programs ensure that science is very much part of what we do. Some of the most covered MGH stories come from our ground breaking research.
Lisa: How long have you been at MGH, what are your roles, and how did you get this position?
Mike: I arrived in October of 2009. I received an email from a friend letting me know they had noticed the MGH position and thought I should take a look. At its most basic level, my job entails the traditional proactive and reactive media relations (pitching stories/pairing our experts with media). I also oversee social media for the Public Affairs department and do general writing assignments like web stories or annual report stories. Two examples are http://www.massgeneral.org/about/newsarticle.aspx?id=2462 and http://www.massgeneral.org/about/newsarticle.aspx?id=2377.
Lisa: What do you do specifically in this role?
Mike: While at MOS, I would say 80% of my job was proactive and 20% reactive, whereas as now that number is reversed. We respond to hundreds of media calls each year and also operate a live television studio to accommodate national and international broadcast requests. We in Public Affairs work on a beat system with staffers covering different areas of the hospital. Mine include Global Health, Neurology, Neurosurgery, Imaging, and Orthopedics. The other part of what I do – and a major reason why I was hired – was to help launch and integrate social media communications. Luckily my superiors saw the importance of social media before I got here and when the opportunity came to fill a position they made social media a priority. So to that end, I launched @MassGeneralNews on Twitter last February and hope to hit 1,000 followers by the end of this year. I also launched our YouTube channel (www.YouTube.com/massgeneralhospital).
Lisa: Does MGH have a Facebook presence as well?
Mike: Yes, our colleagues in the development office do a great job: http://www.facebook.com/#!/massgeneral , we have a really nice collaboration. Recently, some colleagues and I did launch a profile page in order to communicate bicentennial (we turn 200 in 2011) and history info from the hospital. The profile belongs to Padihershef, a literal mummy who resides in the Ether Dome: http://www.facebook.com/#!/MGHPadi
Lisa: How much time do you spend on the average day?
Mike: Assuming my day isn’t a crazy media day with a major event, I generally work 8:30-5:00 with 60-70% of that time being spent on media calls and the vast majority of the remaining time spent on social media (practice, monitoring, and self-education).
Lisa: What happens with Twitter when you are off duty – do you ever check nights or weekends? Mike: When it comes to Twitter I’m never off duty. While it’s not required for me to check on weekends, I absolutely do. While that probably comes more from a personal desire to grow the presence and not an expressed mandate, I also know the conversation never stops and I like to keep up on it. Occasionally I “unplug.”
Lisa: What oversight is there?
Mike: I’m fortunate to work with superiors and colleagues who “get it.” Though our social media presence is monitored by the leaders of our department, we have a decent amount of leeway.
Lisa: Do you get physicians and other staff at MGH involved, for instance feeding information to you to tweet?
Mike: Often we are approached by different groups in the hospital about the use of social media to promote their efforts. We do in fact work with doctors and administrators from various departments to add their content to our platforms whenever possible and ask that they send us current interesting content. For example we were approached by an extremely talented group of researchers from our Emergency Department who created a great free app for the iPhone, which lets users find the closest emergency room to their location anywhere in the United States. Our strategy here was to create this YouTube video and then pitch to bloggers encouraging them to use our embed code for their stories. We got great a great response on this as it was posted to Boston.com and Wired.com’s Geek Dad Blog. Although it’s tough to get publicity among a sea of apps, our video allowed us to provide more content for bloggers and increased our chances of getting attention. Even if we didn’t have the pitching success we did, we were able to tweet the video and the link to download, as well as post to our Facebook page. It was a great combination of traditional pitching, content creation, and social media.
Lisa: Does MGH have a social media policy?
Mike: MGH does have a social media policy which helps to provide clarity for our employees and audiences for social media interaction with MGH, or on behalf of MGH.
Lisa: What is the ROI – is MGH doing this because everyone else is or because they see this as essential to their mission, and how do you know you’ve been successful:
Mike: For us, it was easier to think of social media as an important tool we can use to accomplish the goals we already have. We are more of a news/PR office and not marketing so I’m more concerned with communicating and sharing stories or useful information and less about bottom line. Although that’s probably a little shortsighted of me, it’s easier to get started when you already have the goals and the content, and think of social media as a vehicle for both. While I think ROI is important, I’m a true believer that if your reputation is solid you’re going to get the business anyway. To MGH, social media is essential to our mission. Our mission (although I’m not quoting) is to help people. If we know people are looking for help through social media channels, we should be there. For me, it’s like us not having a website or telephone: how can we help if we’re not using the same technology as our patients?
Lisa: How much monitoring do you do of MGH’s online presence and how (obviously you saw my tweet!)?
Mike: I monitor Twitter constantly. I have searches set up via tweetdeck for our Twitter handle, hospital name, and several of its variations. While I don’t log any of the info in any kind of official report, I do respond to and inform folks we work with about any tweets or communications that could indicate a wide-spread issue that warrants a response. Also, if time allows, I do some simple Google searches (blogs, news, etc.) just to see what’s out there.
Lisa: What are specific strategies you use to follow, get followed, tweet, and get retweeted?
Mike: First off, the tweet is king. I try to always offer interesting content, or at least content that is a bit more humanizing and takes away the mystique of a huge faceless organization. Beyond that I try to slowly follow people who are tweeting about us or healthcare in general. I find using hash tags to file my tweets by medical topic often results in followers because people searching that tag are usually the most passionate. Also doing simple things like adding social media icons to my email (as long as outlook is behaving) and putting information about our Twitter handle in the weekly employee newsletter helps. Most importantly, I build followers by engaging. For me it would be easy to view Twitter as a one-way source, but MGH needs to be retweeting and asking questions to develop a truly valuable follower base. Also, our breaking scientific research news is probably our most retweeted.
Lisa: Do you compare what you are doing to other hospitals or any other organizations?
Mike: I definitely like to see what other hospitals are doing with social media. Any great organization keeps up on industry trends and I think lots of hospitals across Boston and the country are being really creative. It’s also a great benefit to attend conferences with folks at other hospitals because we trade ideas and tips. I think that’s what I like most about social media: the community spirit.
Lisa: For someone starting out in a similar role or wanting to improve a hospital’s online presence, what are your 5 pieces of advice?
Mike:
- Content. If you don’t have good content, you have nothing. Obviously this isn’t my idea but I believe it’s the gold standard of online communications. Not offering good content would be like opening a YouTube page to host your TV commercials…snooze……
- Commit. Never use social media “cause everyone else is doing it.” Once you have an idea of your content, make sure you commit the time or allow your employees to commit to learning and practicing it. Even if it only takes a minute to tweet something, you need to be looking at Twitter constantly. At any other job, searching YouTube channels may be grounds for a conversation with your manager, for me it’s a matter of researching best practices and keeping up on trends.
- Culture. In order to become involved in social media, you have to understand the culture. If you ever friended your parents on Facebook, you get my point. When starting out, just listen. This is especially true with Twitter. For example, someone who doesn’t understand the Twitter culture might find it odd for MGH to retweet a “competing” hospital who just won an award for a service we offer. But the Twitter audience is completely comfortable with this. At the end of the day it’s about standing on your own work, your own reputation.
- Put yourself in your audience’s shoes. For us, it’s patients. When I think about good content, I try to think about a person who has just learned that they or a family member has been diagnosed with an illness. What they want is to get the critical information quickly. What they don’t want are slick commercials, pop up ads, or a link to a phone number with no information.
- Be human. How many times do we hear about robo customer service? Or how some large organization seems like a monolith that doesn’t listen? Social media puts the power back in the consumer’s hands and it’s important to engage in two-way conversation. When people feel connected to your organization they’ll work with you. Even if they have a negative experience, they’ll return as long as they’ve been heard.
Writing Enticing Yet Accurate Health Content: Lessons from Journalism
Gary Schwitzer is Publisher of HealthNewsReview.org, where he and his team grade daily health news coverage. He works to improve health journalism with the goal of improving consumer knowledge and decision-making. He was the founding editor-in-chief of the MayoClinic.com site. While his guest lecture at Web Strategies for Health Communication was on health news reporting, I realized that his review criteria seemed equally applicable to any health content and asked him if he agreed:
LG: You critique health news stories and provide guidelines for health journalists; do your guidelines apply to all health writing using the web and social media?
GS: I think our ten criteria could be applied to any form of health communication, perhaps including one’s interaction with one’s own caregiver. They may be even more helpful or relevant for health writing on the web or in social media, where standards may sometimes dip a bit.
LG: Do you have recommendations about how to create titles that accurately reflect content yet are enticing? Looking at recent titles of articles you rated, some are descriptive but some are more sensationalistic, almost what you would expect to see on the cover of Cosmo.
GS: We often see solid reporting that is undercut by a sensational headline. Good journalism, good writing, good communication doesn’t need the sensational title or headline to “sell” it. In TV news, for example, it’s not only the headline that matters but the “tease,” the promotion, the visuals, the introduction. Someone with a publishing concern must take responsibility for the total package of what is communicated.
LG: What about how to write accurate yet enticing, snippets of articles? This is important when the entire text doesn’t appear on a home page and is increasingly important in social media when the number of characters may be limited.
GS: It is possible to convey accurately with balance and with relative completeness even in TV news or in a web “abstract” or in social media. Of course, with the latter, the use of links to flesh out the “completeness” is not only possible but desirable. I learned how to do a pretty good job even within the constraints of TV news during my career and am now trying to learn to do so even with the 140-character constraints of Twitter.
LG: What advice do you have for health communicators who are creating web or social media content?
GS: Content is still king. Substance over flash. Steak over sizzle. There is a tremendous responsibility to get things right on these vital health and health care topics. Increasingly, I see the value and importance of being correct – perhaps at the expense of not being first. We need to understand that there is true harm that can be done with inaccurate, imbalanced, incomplete communication on health care topics. Our first and greatest responsibility is to our readers – not to the perceived style demands of our medium or format within which we work.
A Consumer Representative to the FDA on Advocacy
Diane Aronson is a Special Government Employee, serving as Consumer and Patient Representatives for the Food and Drug Administration (FDA). Working through its Center for Drug Evaluation and Research (CDER), Diane has served on many of its Advisory Committees and has been a standing member of the Arthritis Advisory Committee. She is Past Executive Director of RESOLVE, the National Infertility Association, Past-President of the International Federation of Infertility Patient Associations and the Road Back Foundation, an on-line service that provides education, medical articles and peer-support about the use of antibiotics for the treatment of rheumatic diseases. Diane has also served as a Consumer Representative for the Centers for Disease Control and Information (CDC) and the National Institutes of Health (NIH).
LG: How did you become a health consumer advocate?
DA: I noticed at a young age that I can be compelled to speak up for others when needed and that this ability can lead to making a difference. My style is to listen carefully and provide support and information, especially where issues of safety or risk are concerned. The path to my health consumer advocacy work started as a result of my own medical issues with arthritis, cancer, and infertility. My rheumatoid arthritis wasn’t diagnosed for years after symptoms started in my late teens. The pain and fatigue were discounted by my physician who told me that I looked fine despite some irregular lab results and took no further action to explore what caused the symptoms. What activated me included the consequences of this approach and a desire to help others who struggle to find successful medical treatment. This perspective encouraged me to volunteer to share my experiences and later, led to paid consumer advocacy work and to my current position with the FDA. Despite past complex and challenging health issues, I am grateful to be healthy and very active.
LG: How did you start working at the FDA?
DA: I learned that the FDA was seeking a Consumer Representative for their Arthritis Advisory Committee and so I applied. They are often looking for individuals who can provide a consumer perspective to their advisory deliberations as well as an interest in and ability to assess medical data. The application process is about six months long as it includes a review for any potential conflicts of interest.
LG: Tell me about what you do at the FDA.
DA: I am asked to serve on Advisory Committees to review drugs that may need an additional review of outside experts. Committee Panels most often include physicians, researchers, statisticians, patients, consumers and non-voting industry representatives. For each meeting, panel members are sent information from the company-sponsor as well as the FDA about the drug to be reviewed. A list of questions is also sent to panel members who are encouraged at the meetings to ask questions and, at the end, to vote on and provide opinion about the drug under review. For me, the position requires the combination of the advocate in me, an interest in science and biology, my past medical experiences, the desire to represent a broad constituency of health care consumers and a general interest to review details and solve problems. It is very gratifying through my research and study before meetings, and especially as a layperson, to be able to contribute a perspective that may not be considered but may be helpful to the discussion. At one panel meeting and due to my research preparation, I found myself advocating for members of the military who might be prescribed a potent drug that was being reviewed. I found that one of the active ingredients was counter indicated with SSIs. Since many in the military are reported to be treated for depression with SSIs, I advocated for a consideration of this interaction on the label should the drug be approved by the FDA. I am hopeful that this kind of a consumer perspective can make a contribution to the deliberations when I raise concerns such as this.
LG: Can you tell me another instance?
DA: I served on committee for a cancer drug which had a regimen of 3 years and included some serious side effects. There was an alternative existing drug with similar side effects, effectiveness and result but with a short-term treatment. I raised a concern that the long-term treatment would be arduous on patients with only a very slight percentage of improvement in the death rate. Although we are asked at panel meetings to review safety and efficacy, I believe that quality of life issues are also an important perspective.
LG: What role does empathy play in your advocacy work?
DA: I leverage my own experiences and understanding of being challenged by a health concern, my broader experience in representing consumers and my desire to improve the quality of people’s lives when they are suffering physically and emotionally from health concerns. In the case of the cancer drug, it was clear to me that no one should suffer longer than necessary from side effects and with little improvement in the primary outcome of death survival.
LG: What achievements are you proudest of?
DA: I have served as a mentor for new Consumer and Patient Representatives and enjoy passing on tips to help with the initial orientation process. I am extremely grateful to have had the past work advocacy opportunities to author countless editorials, articles, book chapters, etc. and to give many speeches nationally and internationally at consumer and medical associations, run conferences and workshops and work on legislation about consumer health care issues.
LG: What direction do you see the FDA moving in?
DA: I am truly in awe at the number of issues that the FDA considers regarding drugs that have already been approved and by ones that are in the pipeline as well as the huge number of medical devices for which they have oversight. Since the passage of legislation (FDAAA), the FDA has been working on enhancing transparency and involving more consumers and patients in their various activities. The social media is now very important as an educational resource. Recently, it has reported on a number of drugs that had been approved by the FDA but now have serious side effects reported which weren’t able to be considered at the time of approval. Examples are a recent one for diabetes and drugs used for osteoporosis. FDA leaders want consumers to more readily report side effects to them via the MedWatch area of its Web site set up for safety information and adverse event reporting. In addition, they hold frequent meetings and Webinars on a variety of topics for patients and consumers and a number of these presentations are available through http://www.fda.gov.
LG: How do your advocacy skills work with family and friends?
DA: Most of my family and friends probably don’t realize the level of involvement I have had as a lay health consumer advocate but some do turn to me and ask for a perspective that they can add to their research and deliberations with their physician. I might suggest resources and strategies but above all provide a listening ear to their concerns and overall experience. I speak up about health care perspectives but realize that in the end everyone has to make their own choice about their personal health care decisions.
LG: What are your recommendations to people who have health conditions?
DA: Read everything; talk to others. Do the research. Seek out credible internet Websites and verify information with published medical articles. Consider joining a support group. Make informed decisions using evidence-based information not just an anecdotal experience about which you have heard. Seek medical professionals who will work in partnership with you and respect your decisions about treatment.
LG: Should everyone who experiences health problems become “activated” and help others in some way?
DA: Advocacy is a passion. You have to have a strong desire to take the time required to make someone’s experience easier and more hopeful. And, you need to come from a position of knowledge so your research and perspective are critical. In addition, you might feel activated towards advocacy at various points in your life and not at others, depending on your current experience. The hope is that education, peer-support and advocacy on behalf of others can contribute to enhancing the health care system to benefit a broad group of individuals impacted by debilitating diseases.
Better Health Websites through Better Design: Insights from Tania Schlatter
I interviewed Tania Schlatter, one of the best designers I know and a guest-lecturer for Web Strategies for Health Communication (pictured to the right), about color, imagery, and other aspects of health website design.
Lisa: How is the design of health websites different than for other types of sites?
Tania: The design of any site goes back to the goals of an organization and what people coming to a site need. Healthcare consumers can be overwhelmed and are in need of highly credible information. While every individual has different issues, healthcare consumers are similar in their need to conduct research and apply what they find to their situation.
Lisa: What are some examples of successful sites in your opinion?
Tania: I like Patientslikeme and WegoHealth in part because they use different models to help people manage their health better. The new Mass General site puts information first and has a navigation scheme that does a pretty good job of making that information findable. Healthcare websites overall do not have inspirational visual design, although AthenaHealth is very nice.
Lisa: Why aren’t health websites inspirational? What would happen to consumer health if they were?
Tania: From the practical perspective, healthcare is about people, and it is very hard to show health-related vignettes that are real. Health-related stories and imagery slip into being sentimental or sanitized, neither of which are inspirational. No one wants to show or tell the real moments in healthcare. There are privacy issues, and anything staged looks and sounds that way.
Change – and inspiration – is only going to come from consumers. They own their stories, fortunately. I have a friend who is a breast cancer survivor and who has ovarian cancer. She posts photos of herself on Facebook. She is incredibly beautiful and strong throughout it all – truly inspirational. Fortunately her images are private, and they should stay that way unless she decides otherwise. I hate to imagine patients selling their stories to help any site – other than one that they control or that is truly for the common good – look good.
Sites that provide accurate information in a findable way with enough depth and context to be helpful are doing what they can, given the circumstances. There are a lot of content-rich heath-related sites out there. More can be done on these sites to improve visual and information presentation hierarchy. There are a lot of exciting developments that can help. Designers now have many more fonts available to use (see typekit.com) and HTML 5 and CSS3 are enabling more layout options and greater control. On information-rich sites typography and layout can be designed to highlight higher-level information visually, break up detailed information and provide video that aid in the explanation of content.
Lisa: Speaking of imagery, many sites use stock images of smiling people, yet the sites are often about serious diseases. What makes imagery appropriate for a health site?
Tania: Appropriate imagery related to health helps inform, so while not visually appealing, photos that show what the text is describing are appropriate. These images need to make sense visually for the audience, so it is important that they are accurate and informative. One way to deal with photos that are informative but not so nice to look at is to use them small and allow the user to click to see them larger.
Photos of caregivers/providers are appropriate and helpful, both as headshots with biographical information and showing people in their working situations. Showing healthcare workers on the job can be an effective way to help site visitors know what to expect from an unfamiliar situation. For example, seeing practitioners with a patient in the care setting can help people imagine themselves in the situation and manage anxiety about an upcoming visit. Patients need not be shown – their back can be to the camera – but it is great to see both the provider in action and the environment. Sometimes organizations are resistant to using pictures of staff to help set the tone on a website because they do not want to show people who might leave the organization. If the images are used to set a general tone (as opposed to identify specific personnel) then the concern is purely an internal one. Site visitors are not that literal in their reading of photos, and the photos can still be effective.
Lisa: Color is one of the most noticeable things in a site and, I imagine, one of the areas where a designer is dealing with opinions, taste, trends, and recognizable branding both from colors that are associated with companies or with diseases (like purple for Alzheimer’s disease). What is the best way to select colors and a color palette? How does a site color scheme work with advertising? I ask this because I just saw MyDr.com.au where the advertisements are by far the most vivid parts of the home page.
Tania: Color is a tool that helps set a tone and create visual relationships. Color needs to be selected based on strategic goals, not subjective preferences. For example, it is a great tool for helping information-rich sites be more legible and navigable. The BBC Health site uses color to consistently distinguish navigation from content, which both looks great and helps the user.
If an organization has colors that it uses in non-web communications, the designer and client team need to consider if it is desirable to link the website to other communications visually. If it is, then using the same color palette is an excellent way to do that.
MyDr.com.au looks like it is trying to balance the need to convey useful information with the need to make money from advertisements. If the site is more colorful the ads will be less prominent, which could be a problem for the site’s bottom line. The site’s use of blue with a little brown is consistent which helps the user distinguish editorial content from promotions and which may help visitors focus on content.
Lisa: When do features like the slideshow used by WebMD and countless other sites, or the less ubiquitous Ask the Expert column, work well for a site?
Tania: Slideshows are a way of marketing or conveying topical information. They don’t work for conveying important content because it is unlikely that a user will see all the slides. Ask the Expert can be valuable especially when a qualified person provides answers. But is all comes back to site goals.
Lisa: Describe the process of defining clear goals.
Tania: Goals come down to knowing who you are speaking to and their needs. Site owners need to know this, segment their users, and then use all the tools they can – from site analytics to in-person usability testing to understand how effective their site is. My biggest recommendation is to be close enough to users to know if you’re hitting the mark through processes like regular usability testing and an advisory council used to help inform feature or other strategic decisions a few times a year.
Lisa: I know from experience how few organizations actually do that. Is that your experience as well?
Tania: There is a lot of resistance to having direct contact with site users. Communicators like the idea but many shy away from doing it. It is uncomfortable to open your work to the people who use it. I think people worry that if they knew what their users wanted they would have to provide it, but that is not necessarily the case. Sometimes knowing what people prefer can help even if preferences are not in line with organizational goals. I was working on a logo redesign for an established organization. Designs were down to two options. One was modern and cutting-edge looking. It captured how the organization said they wanted to be perceived. The other was traditional – precisely what stakeholders said they wanted to avoid. However, the traditional design was favored by the majority of the audience – people who were considered to be “users” of the logo. We knew that going with the traditional logo would be a mistake for the organization, however there was significant pressure to go with the preferred option – it was what people liked. The bottom line is that you need to know what people like and why. When we thought about why the cutting edge logo was off-putting we realized that the organization had undergone several re-orgs in a short amount of time. People were not interested in change. They wanted stability, which is what the traditional logo represented. Once we figured out that change fatigue was behind the preference, we could push the cutting-edge logo with confidence because we could address their concerns in other ways. It takes some work to use user input in a way that is truly strategic. The thought is overwhelming to people who may feel that they have too much input already. It’s ironic since it’s the most helpful thing they can do.
Lisa: Can participatory design be successful, when users are involved from the start in the design?
Tania: Absolutely, it’s a great way to use people who are your audience or to get stakeholders directly involved in design issues. But again, having people participate in the process does not mean that they are designing the end result. Participatory design is a method for acquiring an understanding of end users’ (or stakeholders) situations, motivations and goals to inform the design, not create it.
Lisa: We worked on a Latino Alzheimer’s caregiver site together where there was significant expertise among the team but no representative users until the evaluation phase. Is that typical?
Tania: Yes, it is hard for people to understand that they don’t know their customers, or that they can learn more by having them closely involved.
Truth Is Stranger than Fiction and Deceptive Websites Are All-too-Plentiful
The Boston Globe reported on the sentencing of a former US Airways Express pilot, Stephen Sharp, “for selling a powdered drink mix over the Internet that he claimed was ‘100 percent’ effective in helping drug-using truck drivers, pilots, and train engineers pass federally mandated drug tests.” The ungrammatically-named “yourintheclear.com” no longer seems to exist.
Mindful of ongoing debate by Gilles Frydman and others about indicators of health website credibility, I searched for other sites selling similar products (there is no shortage) and looked on sites like Craigslist where people post questions about how to pass drug tests and how to detoxify. Based on a quick perusal, I found answers ranging from product advice that I suspect is similar to what “yourintheclear.com” sold to more than I ever want to know about urine temperature to what seemed like common sense advice.
Equally fascinating, in my searches I found airlinepilotforums.com/ where stephensharp “set the record straight”, ironically, under a picture of a smiling pilot selling Dr. Schulze’s Detox Food. stephensharp explains all, from the name (“No one would type in ‘Your’RE or Youre in the clear’, I tested it”) to the product’s purpose (it “was nothing more than a diuretic to help flush your body”) to the promotional text (“it did mention unfair drug testing and various drug cutoff limits”).
The explanation went on to talk about the random drug testing in the airline world and how in 2003 he started Wholesale Organic Herbs – Gourmet Spices For Top Chefs and Organic Herbs And Cooking Spices. The websites look like they haven’t been updated since 2003. They also have a social media presence that promotes their products and include “Fun Facts”, such as “in 2005, the U.S. produced 42 percent of the world’s corn”. I tried out some of their fun facts on my 11 year old, who often emails me from a random facts app and loves Ripley’s Believe It or Not, and she didn’t think any of their fun facts were the slightest bit interesting.
Poor website design isn’t a crime, nor is poor social media use. So, what happened? According to stephensharp, in 2008 some of the other “online stores were raided as a result of operation True Test overseen by PA district attorney Mary Beth Buchanan… With much criticism in the press towards Buchanan as far as being overzealous and abusing her power I simply have no comment to make. I am not here for a finger pointing war. You can google her and make your own judgements. She faced termination in late 2009 and stepped down from office.” He went on to say that he didn’t think he “was selling anything illegal as still today there are hundreds of web sites selling detox products.” stephensharp concluded, “I am also on unpaid leave now with a future meeting planned and my future uncertain.”
Well, the next nine months, the length of Stephen Sharp’s sentence, are certain. His request for probation was rejected, and his attempt to express regret for the impact on his family was silenced. One only hopes that the ultimate impact of this is that other people with similar types of sites close them down before being caught. One also hopes that the reporting of Stephen Sharp’s sentencing raises awareness of the need for consumer vigilance.
How Carolyn Kingston Used the Internet Before and After Hip Replacement Surgery
Diana Cole told me, “The internet saved my life,” and recounted a story about using the internet to identify a bat bite and learn about rabies in bats, leading to an emergency room trip. She later introduced me to her sister, Carolyn Kingston, who attributed her successful outcome from hip replacement surgery to her use of the internet. I asked Carolyn about her general use of the internet for health, her specific use for her surgery, and the blog she started to record her surgery and recovery.
Lisa: When did you start using the internet for health information and why?
Carolyn: I’ve been using the internet for health information for years, mostly to supplement and clarify information I get from my doctor. For example, as a person who has had chronic colitis for many years, I explored a number of sites searching for alternative treatments that would help cut down or eliminate some of the strong medications used in traditional medicine. I found a book online with a holistic dietary approach, which I followed during flare-ups for a month or two at a time for several years with limited success. Ulcerative colitis is tricky because up till now doctors have no idea what causes it.
Lisa: Do you and Diana discuss your respective internet use?
Carolyn: Diana and I often discuss and share information about use of the internet for health related issues. Her experience with the bat bite is an example. My health-related searches on the internet are usually very targeted, and directed toward answering a specific question rather than broad, generalized browsing.
Lisa: What led up to the hip replacement surgery Diana told me about?
Carolyn: I first noticed discomfort in my right hip about 8 years ago. In the last few years X-rays and an MRI showed increased deterioration of the cartilage in the hip joint and an increasing narrowing of the space between the ball and socket of the hip – typical of degenerative osteoarthritis. The time to have hip surgery is determined by how it feels, not how it looks, so it is largely the patient’s decision. With regular low impact exercising, such as swimming, walking, yoga, and tai chi, and herbal remedies, such as Glucosamine Chondroitin and fish oil, I managed to keep going pretty comfortably until the last few months. Even then it was not as much chronic pain but lack of mobility and the ability to enjoy exercising that was the impetus to schedule the surgery.
Lisa: At what point did you start searching online?
Carolyn: In January 2010, right after making the appointment for surgery on April 7. I’d seen my orthopedic surgeon for the second time in December, looking for a medication stronger than Naproxen and Tylenol. He prescribed Tramadol and we discussed whether to have the surgery now. Basically it was left up to me – a wait and see how it goes situation. In my first appointment with him about a year before he described in detail the advantages of the newer anterior approach to hip replacement, that the entry was more toward the front of the hip resulting in less bleeding, no cutting of muscles, and faster recovery time. In addition titanium is now used for most of the replacements, so it lasts longer, up to 25-30 years.
Lisa: What information were you looking for?
Carolyn: My first internet search was to find out more about “anterior hip replacement” and there was lots of information out there, including medical websites describing all the advantages and testimonial blogs by patients. I found few negative testimonials about this approach to hip surgery. What I did not use the internet for was to look for alternatives to surgery, and there were many ads on sites I visited claiming various ways to avoid hip replacement. I also did not research surgeons online because I was fortunate to have an excellent surgeon whom I liked, as well as the positive testimony of a friend who’d had a very successful result with the same surgeon several months before.
Lisa: Diana told me that you learned things online that led to a good outcome: what were they and could you have learned them in other ways?
Carolyn: What I learned online was very helpful both pre- and post-surgery. I found sites that had lists of pre-op exercises, which I printed out and began doing faithfully 6 weeks before the surgery. I found checklists of how to prepare your home for post-op recovery. I searched Amazon for books and ordered two, plus a meditation tape on preparing for surgery recommended by my therapist. I could have found out these things through my health plan, but this was efficient and didn’t involve making an appointment. To satisfy my need for information I ordered online the 2010 version of John Hopkins paper on Arthritis and set a “Google Alert” on current media articles on hip replacements. Some of this information was useful for the short speech I gave in March to my local Toastmasters Club on “Making Medical Decisions.” Post-surgery I felt ready to watch a step-by-step video of how this particular surgery is performed. I was also interested in how long it would be to recover full muscle strength in the muscles of my right leg.
Lisa: Did you look for specialized information, such as concerns you had as a singer? Were these searches successful?
Carolyn: I googled the length of time post-surgical effects of general anesthesia and the effects of intubation on the singing voice. On that issue I did not find any helpful information.
Lisa: How has your experience influenced your attitude toward using the internet?
Carolyn: My attitude toward using the internet is very positive. I use it to educate myself and to find reassurance, but not for self-intervention. I am very wary of sites that make claims to heal you in X months or days. The internet is an amazing resource which I use daily for one thing or another and I am grateful for its existence.
Lisa: I saw the blog you started, Becoming Hip. Can you tell me why you started it and why you didn’t continue it? Have you read other health related blogs and, if so, did you find them helpful?
Carolyn: I started my blog partly to learn how to set one up but primarily to share my feelings and thoughts day-to-day about my upcoming surgery with friends and family. It was also a way to remember my mother who died last summer and who had a total of three hip replacement surgeries, the first in 1978. In those days the prosthesis didn’t last as long, necessitating a re-do of her first one 17 years later.
Lisa: Why you didn’t continue it?
Carolyn: Somehow I got in the habit of writing my entries longhand (something I am used to doing in my journal) and never switched over to writing on the computer. Post surgery I wrote mostly to record the rehabilitation progress I was making which will be useful in the likely event I have the other hip replaced. Your question, however, has prompted me to transcribe what I wrote over the last 6 months and I am posting them bit-by-bit on my blog.
Lisa: Have you read other health-related blogs, how did you find them, and did you find them helpful?
Carolyn: I did read a number of other blogs and found them of varying usefulness. Some were way too self indulgent, others were very informative and encouraging. Recently I was concerned about muscle tightness in my operated leg so I Googled “muscle tightness post hip replacement” and found a very helpful entry on an Orthopedic website. It re-assured me that muscle tightness often takes several months to resolve.
Lisa: Did you – or do you still – follow any of these blogs regularly?
Carolyn: No, I don’t follow any blogs regularly. I usually just Google a specific question.
Lisa: Did you show your blog or journal to your doctor? Did you talk to your doctor about your internet searches or ask for recommendations of websites?
Carolyn: No, I didn’t.
Lisa: What advice do you have for someone in your situation based on these experiences, both your internet research and your use of a journal and blog?
Carolyn: If you are a person who likes to have a full understanding of what you will be going through, the internet is a great resource. It can’t replace personal conversations with your doctor of others on your support team but can give you more understanding and greater peace of mind.
Walt Willett and Mollie Katzen on Pyramids, Butter, Sensual Eating, and Food Conversations
I heard Dr. Walter Willett speak about the evidence-based food pyramid developed at the Harvard School of Public Health, the Healthy Eating Pyramid, and immediately read Eat, Drink, and Weigh Less: A Flexible and Delicious Way to Shrink Your Waist Without Going Hungry by Mollie Katzen and Walter Willet. Mollie Katzen is the well-known author of many cookbooks, including the acclaimed Moosewood Cookbook, with more than 6 million books in print. I interviewed Walt Willett and Mollie Katzen by email.
Lisa Gualtieri: Do you characterize your books as weight loss books, healthy living books, or something else? Are you working on another?
Walt Willett: Eat, Drink, and Be Healthy is about healthy and enjoyable eating. Eat, Drink, and Weigh Less is the same, but focused on weight control. I’m working on another, focused on doing this with a limited budget.
Mollie Katzen: My books focus on making healthy, delicious food accessible to everyone.
Lisa Gualtieri: Are there foods where it makes a difference to buy organic or use specific cleaning processes before consumption?
Walt Willett: There is little evidence of direct effect on human health, but there can be important environmental benefits. So far, there is no real evidence for specific foods.
Mollie Katzen: If I have to prioritize organic, strawberries, nuts, bell peppers, and apples are at the top of my list. Also, if using citrus zest in a recipe, I try to be sure it is organic, so it won’t have chemical residue.
Lisa Gualtieri: With new research coming out all the time, how does one know what to believe especially when conflicting data arises?
Walt Willett: This is a critical point; you can find almost claim imaginable on the web. A key issue is to never view any study in isolation, but rather to consider all the evidence. We try to give this perspective on our departmental website: thenutritionsource.org.
Mollie Katzen: Fruit and vegetables, whole grains, legumes, healthy oils and nuts, are always winners – and no research will tell you otherwise. So if you maximize these in your diet, you’re on a good track.
Lisa Gualtieri: How does one evaluate trends – such as everywhere you look there are articles about Vitamin D now, and the supermarket is full all of a sudden with Probiotics?
Walt Willett: We do try to do this on our website.
Mollie Katzen: I defer to Dr. Willett on this one.
Lisa Gualtieri: I heard Malcolm Gladwell attribute the popularity of the Atkins diet to the ease of following it – most people know what is protein, what is a carb. The revised HSPH food pyramid is significantly more complex than the USDA one. What can make it easier for people to understand and follow it?
Walt Willett: I think our pyramid is really pretty simple: the key points are healthy fats, healthy carbs, healthy protein source, and plenty of fruits and vegetables.
Mollie Katzen: Dr. Willett’s pyramid is the one I recommend.
Lisa Gualtieri: Julia Child promoted the use of butter in cooking. Does the use of butter vs. butter substitutes really matter and how careful do people have to be about their purchasing decisions?
Walt Willett: It does matter if you care about your health. Julia Child was not really interested in health, and if one doesn’t care, then you can follow her.
Mollie Katzen: The use of butter is a personal choice. If you love the flavor, but want to keep consumption of it to a minimum, you can “spike” olive oil with just a little butter. You’ll get the flavor that way, but not the added saturated fat.
Lisa Gualtieri: What do you think about websites and mobile health apps for calorie tracking, activity tracking, etc.? Have you ever used them?
Walt Willett: I haven’t tried them, but I don’t think that they can really be accurate enough for calorie tracking… keeping an eye on your weight is best.
Mollie Katzen: I have never used them. I don’t like to eat by the numbers – I call that “cerebral eating.” I recommend “sensual eating” – choosing a preponderance of brightly colored, beautifully prepared plant foods, and basing one’s diet on these. Eating fruit and vegetables to satiety can make numbers unnecessary.
Lisa Gualtieri: What motivated you to start writing cookbooks and how do you believe your cookbooks have influenced people’s attitudes to food and food preparation?
Mollie Katzen: I’ve always loved food and cooking, and have seen firsthand in others (as well as experienced it myself) how acquiring cooking skills can greatly improve the quality of life in every way. I think my cookbooks have made healthy more accessible, rather than more mysterious. At least that has been my goal.
Lisa Gualtieri: Finally, as a web and twitter user, how do you see the web and social media changing how people learn about diet and nutrition, find recipes, and share their experiences with recipes?
Mollie Katzen: There’s a lot of recipe swapping and idea sharing on Twitter and Facebook, all of which allows the subject of food to be a conversation, rather than just one person giving instructions. It creates a virtual town square, where discussion, collaboration, feedback, and support can be mutual. Even though it’s technically virtual, in many ways it makes the communication more immediate, real, and democratic. It’s very enriching and it breaks the isolation so many people would otherwise experience.
Interview with Dana Jennings, the World’s Most Famous Patient Blogger
Dana Jennings writes what is arguably the world’s most famous patient blog about his treatment for prostate cancer. Just to be clear, I don’t have any statistics about how many readers he and other patient bloggers have. I believe his blog is the most widely read and best-know patient blog because of the number of comments he receives and its prominent location in the New York Times Health section, itself widely read. ComScore found that more than 123 million Americans visited newspaper sites in May and the New York Times led online newspapers with more than 32 million visitors and 719 million pages viewed during May 2010.As an avid reader of his blog and an admirer of his eloquence, I spoke to Dana on June 18, 2010 about why he started the blog, how he writes it, and how it has helped him through his prostate cancer.
Lisa: How did the idea of writing a blog first come up?
Dana: I have been a working journalist since 1980. In October 2008, I was working on my 6th book and having trouble writing because I was obsessing over having cancer. At the same time I couldn’t find what I wanted online about prostate cancer even though there is a lot of information out there. So I thought I could write about this. I wanted to give the topic a distinctive voice and be honest, not just about prostate cancer, but about cancer and about being ill. I was concerned about my family’s reaction, but I spoke to my wife and sons and they were fine about it. A colleague put me in touch with New York Times health blogger Tara Parker-Pope who responded positively to the idea. It happened quickly after that.
Lisa: What has been most interesting for you about the process?
Dana: The two most interesting things about it were the extent to which writing it gave me an opportunity to find out what I thought about different aspects of having cancer, and the reaction to my blog, which stunned me. I but didn’t expect so many men to respond that I was articulating things for them or women to respond that I was saying what they wanted their husbands to say.
Lisa: How many readers do you have?
Dana: I don’t really get a count of readers for each post but some, like My Brief Life as a Women, have had hundreds of thousands of views. And a few posts have over 600 comments. I knew my blog had become well-known when Whoopi Goldberg made fun of me on The View.
Lisa: Do you read all the comments?
Dana: I read most. New York Times Op-Ed columnist Tom Friedman gets hundreds of comments and I suspect he doesn’t read all his comments, but it’s a different type of writing. I am a big fan of the 2-3 sentence comment, but even the long ones I skim. When I read my blog comments, I see that they really like me.
Lisa: Are any comments helpful or supportive?
Dana: It is helpful knowing that I’ve been able to help people, that I made it easier for people to talk about and go through this process. I am happy to read the advice in comments but I’m a strong-minded person and have my own ideas. It cracks my wife and me up when people suggest crazy cancer treatments.
Lisa: Are there gender differences in who reads or comments on your blog?
Dana: More women read my blog than men. Men and women respond differently: women tend to be more insightful and understand the emotion I’m trying to convey in the blog while men are more focused on data: name, rank, serial number. Men are more emotionally stunted in our society and think they have to be tough.
Lisa: Have you shown your blog to your doctors?
Dana: My oncologists have looked at it off and on, also the radiation technicians. They appreciate what I have to say. But I don’t write for them because my obligation is to my readers and fellow cancer patients.
Lisa: Is your blog edited?
Dana: My primary job is as an editor, so my posts go through a few drafts and then Tara Parker-Pope reads them and she may have some edits or changes which I look at. Finally a copy editor reviews it.
Lisa: How does the New York Times promote your blog?
Dana: It appears on the Health page with my picture, sometime highlighted at the top. Some posts have appeared as a most emailed article, which itself increases visibility, just like when a book appears on the bestseller list.
Lisa: Do you read other patient blogs?
Dana: I don’t. I spend time reading every day, but I read the New York Times and I read books. I try not to lose myself on the Internet. I’m 52, a dinosaur from age of print, although my sons are amused that I blog.
Lisa: Can you offer any advise about reading other people’s blogs or starting your own solely based on your own experiences?
Dana: I really don’t because I had the benefit of working here at The Times. But, if someone is obsessed about their situation and wants to write, then they should go ahead. It’s a big ol’ Internet.
Why a Private Person Goes Public: Jesica Harringon’s Battle with Breast Cancer While Pregnant
Jesica Harrington is a 5th grade teacher at Timber Trail Elementary School in Castle Rock, Colorado whose patient story was featured on the Johnson & Johnson (J&J) website and in their 2009 Annual Report. Jesica was diagnosed with breast cancer while pregnant with twins, lost one of the babies a month later, and “underwent a mastectomy before beginning four rounds of chemotherapy.” She searched for information online and found little on battling breast cancer while pregnant. Her father, who also searched, found out about a blood test that captures, identifies, and counts circulating tumor cells in patients with certain types of metastatic cancer, which Jesica asked her doctor to order. Jesica delivered a healthy baby boy, completed her cancer treatment, and is in remission. I contacted her because of my interest in patient stories, curious about how her story was featured by J&J and why she decided to tell her story in a very public way.
Lisa: You mentioned that being diagnosed with breast cancer when you were pregnant made it harder to find information. Did you find that the professionals treating were less prepared?
Jesica: Initially, the diagnosing doctor seemed insecure about diagnosing my cancer and in explaining how we would treat it. It was through our (mine and my husband’s) persistence that we went around the recommended procedure and sought out an oncologist directly to help us learn about what we would do with breast cancer and being pregnant with twins. My oncologist came highly recommended and had prior experience with women in my situation, so I felt I was in good hands.
Lisa: Did you search for information online about breast cancer and pregnancy, or did people recommend sites to you?
Jesica: I had friends send me all kinds of information, mostly success stories and current practices similar to what I was dealing with. I searched for answers as well, especially because I had so many questions. The problem was realizing there is a fine line between being/getting educated and just knowing too much.
Lisa: What did you find that was ultimately most helpful?
Jesica: Factual information about types of cancer, methods to treat, drugs and their side effects, and a couple of stories about local women, whom I talked with, who had been through breast cancer while pregnant.
Lisa: How did you learn about J&J’s test?
Jesica: My father was looking for methods to monitor how and if chemotherapy is working. He came across a local news story, which led us to a newly released test used at the University of Colorado Cancer Center (UCCC). He told me to take a look at the article, that it was something he thought I should do. I contacted a rep from the UCCC and inquired how I could take the test. I persuaded my oncologist to order the test and we went from there.
Lisa: Why did you decide to tell your story?
Jesica: People were interested in the information I had. I am a very private person, but also felt that this was something I had to share. I couldn’t keep it secret, when my own life affected so many around me (students, parents, coworkers, family, friends, neighbors, doctors, other women in my situation, media…) In the back of my mind, I hoped that my diagnosis and battle with breast cancer could and would be used for future references. After I had been diagnosed, all of my students and co-workers wanted to support me in my battle-they held a “carnival for the cure” from which all proceeds went to my family and me. Through this event, local papers and news media were contacted. My story initially appeared on a newscast and in a couple of newspapers.
Lisa: Would you have told others your story had your situation been more “typical”?
Jesica: Yes, but it wasn’t. I knew that there had to be more people like me out there searching for information and feeling helpless. Why not take what I’ve experienced and let others learn from it, both from a personal perspective and from a medical point of view.
Lisa: Can you tell me more about the process where J&J contacted, interviewed, and photographed you?
Jesica: Through a publication put out at UCCC, J&J contacted me about the CTC test. I was approached to educate people who are going through a similar experience and to get the word out about a test I found to be helpful during my treatment. I told J&J my story by phone and shared my CaringBridge page as well provided background about all I’d been through. A couple of people come out to interview me, take pictures, and shoot video, both at school while I was teaching and at home that evening. Everything was 100% accurate in both the article and video except they mentioned Boulder instead of Castle Rock in the video.
Lisa: How did you feel about including your students and your family?
Jesica: Fine; I thought it was for a good cause. Someone could learn from my story and experiences and could see what to expect if they happen to be in the same situation. I’d like to think I was a success story, which we all need to help us find motivation to fight a battle such as one with breast cancer.
Lisa: I was surprised J&J posted the two articles and videos at http://www.jnj.com/connect/caring/patient-stories/hope-against-cancer/ and http://www.investor.jnj.com/2009annualreport/medical-devices/hope.html without telling you – it seems like they should have let you know, do you agree?
Jesica: Yes.
Lisa: You mentioned that you did other interviews – what made you decide to?
Jesica: I felt strongly about letting others know about a blood test that was out there to help with tracking chemo throughout treatment. I knew the information wasn’t prevalent and I wanted to get it out there.
Lisa: Has it been helpful for your friends and family that you were open about the process you were going though?
Jesica: Yes, information is very powerful. I wanted my friends and family to know and understand what I was going through. People always feel helpless when others are struggling with a disease and going through treatment and they don’t always know how to help, but by being open about it, I think they felt more comfortable in being there for me instead of feeling sorry for me.
Lisa: Finally, does it help you to know that you are helping others? Does talking about it help you process your own emotions?
Jesica: Yes, to both. I’m a teacher – it’s in my blood. I’ve written journals all my life; it’s something that helps me be able to process what comes my way, to reflect and cope.
From Twitter to Megaphones: Seven Lessons Learned about Public Health Crisis Communication
In Boston we took the availability and quality of our tap water for granted until May 1, 2010, when a major water pipe break interrupted water service to two million Greater Boston residents. Information spread quickly to citizens about the problem and what to do, all the more notable because the water main break occurred on a Saturday. In this age of consumer paranoia about withheld information, the Massachusetts Water Resources Authority (MWRA) was in front of cameras and online, communicating what they knew and what they were doing. Tufts University and the Boston Public Health Commission used communication channels ranging from Twitter to megaphones to get the word out. Their behind-the-scenes emergency planning processes, their response to this incident, and seven lessons learned from this short-lived crisis are applicable to many other crises.
The Evolution of the Tufts Emergency Alert System
Because I learned about the broken water main in a text message from Tufts University, where I teach, I spoke to Geoff Bartlett, Technical Services Manager in the Department of Public and Environmental Safety (DPES) at Tufts about the process they used to communicate about the broken water main. First he told me how Tufts Emergency Alert System started and evolved. Following the Virginia Tech massacre in 2007, DPES, University Relations, and University Information Technology invested in emergency notification system technology and developed policies for when and how it would be used. The Tufts Emergency Alert System was initially intended for life threatening emergencies after the events on the Virginia Tech campus showed the need for rapid and reliable campus-wide communication. In requesting student and employee contact information, Tufts made this clear since they thought people would be reluctant to participate if they anticipated inconsequential messages.
Tufts first used the emergency alert system to inform the campus of the status of a power outage in October 2008 because the email communication plan in place for this type of Tier 2 emergency wouldn’t work because of the lack of electricity. This initial use led to the revised policy that the emergency alert system should be used aggressively for dire emergencies but less aggressively when there is no threat to health, safety, or life. Almost exactly one year later, there was another power outage in October 2009, and short text messages were sent. While there was planning for H1N1, the emergency alert system was never used because there was no urgency to push messages. The third use was for the water main break.
How Tufts Creates Messages
While Tufts considered preparing messages in advance, it didn’t seem possible to anticipate every situation. Instead they created “Strunk and White” guidelines for crisis communication. Their three guiding principles for creating initial messages are:
- What is happening
- What you need to do now
- Where to go for more information.
Messages must be succinct because of cell phone screen size and to increase the likelihood people read them, avoid jargon and abbreviations, and be composed for easy conversion into speech. While the Tufts community is tech-savvy, they are aware that not everyone is connected all the time therefore some messaging includes spreading the word. For many emergencies, especially life-threatening ones like violent criminal incident or tornado warning, content is pre-scripted by Tufts using sources such as the Massachusetts Department of Public Health.
In the case of the water main break, Massachusetts Emergency Management Agency sent out the initial message. When Geoff received the message on Saturday, May 1, he was in a command post on campus with police, fire, and EMS personnel where they were managing the public safety aspects of the Spring Fling concert. Because there was no reported danger or health threat, email was used initially. Later in the day, after Massachusetts Governor Deval Patrick declared a state of emergency, DPES fully activated the emergency alert system. In addition, email, word of mouth, Twitter, and the web were used to spread information.
I asked Geoff if there was concern about any health issues arising from students who drank tap water. He said that there was an FAQ that included the consequences of ingesting water. However the information they were receiving from the state agencies, and therefore their focus, was on the status of the water main break and what to do, such as the boil water order. Student feedback after the crisis ended was largely positive but included that there were terms, like boil water order, that they didn’t understand.
The Boston Public Health Commission Emergency Preparedness Process
To see how a public health organization responded, I looked at the Boston Public Health Commission (BPHC) website and spoke to Susan Harrington. She had guest-lectured in my Online Consumer Health course about their use of the web and social media and I wanted to see how they deployed them in an emergency like the water main break.
BPHC and its partners participate in emergency preparedness exercises to refine their coordination and response. In 2007, BPHC worked with the postal office on a large-scale exercise and last year they responded to the real-life H1N1 epidemic. Just last month, BPHC invited businesses, health care settings, and other partner organization to a Flu Review, where they discussed how BPHC responded, including what they did well, what didn’t work, and made recommendations as they prepare for the next flu season this fall.
How the Boston Public Health Commission Alerted Residents
Susan was in a city not affected by the burst water main on the Saturday the news was announced and received a call from work alerting her to the situation. Working in concert with federal, state, and city agencies, the Mayor’s Office and BPHC relayed important information and coordinated response efforts. The immediate issue was reaching people, which the BPHC first did through Twitter, Facebook, and their website. The Mayor’s Office posted information on its own sites and used its reverse 911 phone system to alert residents. Boston police officers drove up and down streets using megaphones and loudspeakers. BPHC set up conference calls with area hospitals and staffers were sent out to food-service establishments who needed to quickly adapt their procedures for the boil water order. Throughout the weekend, the Mayor’s 24-hour hotline added staffers to help answer any questions residents had. The Mayor’s Office and BPHC also called upon their partners, which included faith-based organizations, schools, and businesses, to spread the message through their own channels, and asked residents to inform the elderly who may not have access to the web and social media. The challenge was responding quickly and reaching as many people, wired or not, as possible. These techniques had been used to spread the word about H1N1 vaccine availability.
Twitter proved very effective at relaying up-to-the-minute news. While Twitter is global, people use the #Boston hashtag and other filters to get local information including traffic updates, event listings, and even local celebrity sightings. Not long after boil water order was issued, the Twitterverse was abuzz with the news – even dubbing a new hashtag for the emergency: #aquapocolypse. The most influential – and most followed – Twitter profiles were not only pushing out timely information, but passing on questions to BPHC, allowing them to respond and dispel any myths.
Creating Fact Sheets
No matter what the crisis, some people worry and they are the ones who especially need facts. One of the main BPHC priorities was posting information and fact sheets to the BPHC website. As a homeowner Susan knew what questions she had, but she had to consider the broad demographics of Boston in terms of where people live, the languages they speak, and their access to water.
BPHC worked with the Massachusetts Department of Public Health to create easy-to-read and culturally appropriate guidelines for the boil water order for Bostonians, including translating the fact sheets into multiple languages using a professional translation company with proofing by Commission staffers. These materials were later updated to reflect the lifting of the boil water order and subsequent flushing out instructions.
I asked Susan about the extent to which they date materials. In a crisis, knowing that an update is available and when it was issued is crucial. Throughout the flu response and boil water order, they posted dates on their websites, but in a non-emergency she said it is a challenge to keep an entire website updated. Fact sheets often are dated but other online materials may not be.
Health Issues and Disease Tracking
I taught a course in Shanghai once and remembered the advice I was given about the level of bacteria being higher in the tap water than Americans are used to. I slipped back into Shanghai-mode and remembered to rinse my toothbrush with bottled water and the myriad of other pointers I had been given. I was curious if Boston residents who drank tap water during the emergency expressed health concerns. Susan said that if pathogens were in the water, people may have experienced minor gastrointestinal illness after consuming that water. A greater concern would be for residents who are immunocompromised.
The BPHC uses a sophisticated surveillance system to track diseases in Boston. (In fact, Boston has been nationally recognized for its disease tracking system.) Health care settings report diseases to BPHC, which in turn, conducts a follow-up investigation and identifies the source of the illness, such as food contamination. These disease patterns are tracked over time. In the case of the boil water order, there was no spike in gastrointestinal illnesses. Google has a less formal process of tracking disease patterns, collecting search phrases to find trends including the spread of illness. Google’s H1N1 flu trend matched up fairly well to Massachusetts’ trend lines.
Lessons Learned
Susan Harrington and Geoff Bartlett both thought the MWRA did a great job of letting people know what they knew, what they didn’t know, and what they were doing to find answers and repair the pipe. This was essential not just to inform people but to allay paranoia and fears given well-publicized situations like Toyota and Vioxx where information was not publicly disclosed in a timely fashion.
Some lessons learned about rapid health communication from the water main break are:
- Develop a rubric to assess the type of crisis as it impacts your institution. When the crisis is over, review, solicit feedback, and refine using what the military call an After Action Review.
- Identify and coordinate with partners in advance. In the case of the water main break, an impressive number of groups coordinated efforts seemingly seamlessly and, in many cases, behind the scenes. Ria Convery, Communications Director for the MWRA, told me that their response can be attributed to the 2-3 drills they perform every year “on a number of different scenarios ranging from dam failures to hurricanes to flu epidemics. Sometimes we perform a ‘tabletop’ exercise and sometimes we involve the whole universe of state agencies and run through an entire ‘event’. Every single drill, no matter the topic, provides an important opportunity for people to think through and be prepared for the worst case.”
- Prepare a communication plan for each type of crisis. While newspapers write obituaries for famous people in advance, you can’t anticipate all eventualities. However, you can prepare guidelines and immediately use them. Flexibility needs to be built in to communication plans, even to the definition of a life threatening emergency and when to select modalities that “wake you up” or more passive ones like email.
- Carefully construct messages to convey needed information succinctly. High-quality materials take time to produce because it’s important to first gather facts and then create and review accurate, appropriate, and easy-to-understand information, be they short like text and Twitter messages, or less constrained by length. Dating material is especially important in a crisis.
- Create messages that inform and allay unnecessary fears. Think like – or talk to – your target audience. Be careful about jargon, although everyone in Greater Boston quickly became conversant quickly with “MWRA” and “boil water order”, which are not in the common vernacular. Terminology was also an issue with H1N1: swine flu was the term adopted by the press initially, but it was distracting because of the association with pigs.
- Use social media, which can be both fast and local. Use emerging informal partners, who Malcolm Gladwell calls mavens, to facilitate the spread of messages in Twitter. But even when people are wired, they aren’t always online. The low tech megaphone and word of mouth works best for some.
- Use crises to educate people. While the water main break left many people with a heightened appreciation for their tap water, it was short-lived. However there may be a missed opportunity here to educate people about water sources, safety, and conservation as well as about emergency response.
Sukar Ala Sukar- A Website Design for Diabetes Education and Support for Saudi Arabian and Middle Eastern Children
Sukar Ala Sukar is a website for 4th and 5th grade Saudi Arabian and Middle Eastern children to learn about diabetes. Nada Farhat, MD, designed this in my fall course, Online Consumer Health, and she and I revised her project to submit to the 2010 DiabetesMine™ Design Challenge, a competition “to encourage creative new tools for improving life with diabetes”, in the hopes that we would get funding to implement and evaluate the site.
Here is our description: We designed a website to meet the education and support needs of children with diabetes, at risk, or with diabetic family members who live in Saudi Arabia and other Middle Eastern countries or whose families are from these countries. Culture and language (English and Arabic) are embedded in the website design which includes separate areas for girls and boys in keeping with societal norms. The website goals are to increase awareness of diabetes and debunk myths children might have, which are carried out though text, video, games, recipes, and activities. Social media further reinforces education and provides peer support. Our goal is to develop and evaluate the effectiveness of the website with Saudi children in the US and in Saudi Arabia.
To me, this project is fascinating in three ways: the impact of culture on effective design; design of a bilingual site when one language is read left-to-right and the other right-to-left; and how health website design for children is different than for adults. Nada’s final paper for the course addresses many of these through her competitive analysis and research. Our initial answers to the culture question are in the entry. For instance, one way to address cultural norms is to separate the site by gender. Another is to use drawings of people since photographs of girls violate cultural norms. We know that bilingual design can be challenging for languages that are more similar than English and Arabic, such as English and Spanish, especially when one language uses more characters than the other to express the same thing. We also know the importance of localization. And for children’s design we want to be consistent with best practices yet be fresh.
We welcome your feedback.
The “Dark Side” of the Internet for Healthcare
While Gunther Eysenbach is famous for saying no one ever died from using the Internet for health, the “dark side” exists: the people who obsessively search for health information, the people who forgo common sense to believe there are easy ways to lose weight and miracle cures for as yet incurable diseases. Another facet is the credibility of online information; I wrote about a company that was caught and fined for fabricating patient stories in Patient Stories on Health Web Sites Can Not Always Be Trusted in both e-patients.net (heavily commented) and MedPage Today’s kevinmd.com.
Another facet of the “dark side” is when technology is the focus instead of patients. We all, as patients, need eye contact when talking to a healthcare professional. I first noticed this when my children’s pediatrician started walking into appointments with a laptop. I was acutely aware of it when a nurse asked me very personal questions without looking at me, which I wrote about in EHR Etiquette and the Importance of Eye Contact in Clinician-Patient Communication, which was published in e-patients.net/ and The Health Care Blog.
Social Media at Sarasota Memorial Health Care System
Shawn Halls tweets for Sarasota Memorial Health Care System (SMH). He has been Market Research Manager at SMH for 12 years. Through him I met his manager, Peter Taylor, the Director of Marketing (pictured to the left). Peter essentially runs an internal ad agency for SMH responsible for both internal and external communication. I interviewed them on February 18, 2010 about SMH’s Web strategy and their use of social media.
Lisa: Start by describing SMH’s Web presence.
Peter Taylor, Director of Marketing, SMH
Peter: Early on we identified that a digital customer engagement platform was fundamental to the future success of all forms of marketing and communications at SMH. The components of this are our website, Twitter, Facebook, MySpace, Delicious, YouTube, Flickr, an external blog focused on a new bed tower construction project, and an internal blog/vlog written by our CEO.
Lisa: Why did you decide to use multiple social media technologies?
Peter: We decided to cast a wide net to increase the likelihood of reaching all of our target audience. There are clear demographic differences; for example, MySpace turned out to be a great place to reach young mothers. Also, we use them differently; Twitter by definition requires quick, concise, newsworthy messaging whereas Facebook is more leisurely and facilitates more of an intimate relationship.
Lisa: What did you see as your opportunity when you introduced social media?
Peter: We wanted to focus on preventative healthcare and saw an opportunity to engage with our audience of patients and get involved in their daily lives in environments where they feel more comfortable (i.e., without being invasive). The advantage to patients beyond education was that if they need to use our services (hospital or outpatient), everything is more familiar and less alienating. They aren’t meeting us for the first time while in a gown being stuck with needles.
Lisa: How do you know what’s effective?
Peter: We use qualitative and quantitative plus anecdotal metrics. We use Google analytics, not just to see how many visitors we have to our website, but to see where they come from and how they navigate through our site. Our website gets 80,000 visits a month (excluding internal traffic), most of whom find it through our url or a search engine. More and more are coming directly from our social media sites. For example we get almost 5,000 visits a month from our Facebook page. We use focus groups on and offline to track our presence and improve our content, navigation, etc. We also continually elicit feedback from our social media sites which has been invaluable.
Lisa: Who actually manages and uses social media for SMH?
Peter: Each person in our marketing department is the CEO of one social media site. This way they each develop an expertise and can dedicate the time needed to stay active.
Lisa: Can you give me any time estimates?
Peter: Shawn, for instance, uses twitter. Probably on average 30 – 45 minutes a day but it varies.
Shawn: I registered @smhcs in November of 2008 but didn’t start actively tweeting until March 2009. My vision was to try out social media. In keeping with our goal of connecting to and engaging with our community before they need us, social media is ideal. I love Twitter because it allows us to respond to customer service issues in near real-time. Since I am the only person currently tweeting at SMH, the policies that guide my tweets are mostly between my ears. We are in the process of opening Twitter up to the rest of the Sarasota Memorial staff, though, so we’re working on a more formal approach that will be shared in the coming weeks. Right now I don’t have a separate Twitter account for just personal use. I don’t use our Twitter account to just promote our hospital, certainly I do that too, but I’ve tried to interject professional and personal tweets in the Sarasota Memorial account to add a little personality to it. Therefore, I’ve never really felt a need to have a separate Shawn Halls account. What you see in @smhcs…is Shawn Halls.
Lisa: Do you also use social media internally?
Peter: Internally there is limited access to social media right now. We are taking baby steps. As Shawn said, we just granted internal access to Twitter 60 days ago. We recently developed social media guidelines for our 4,000 employees which are still in the process of being implemented.
Lisa: What are the internal concerns?
Peter: HIPAA violations, privacy, and somebody posting/saying something stupid they would regret later.
Lisa: Are there any concerns about disgruntled employees or whistleblowers?
Peter: Yes, these are valid concerns but we would treat them like any other situation where this may arise, independent of technology.
Lisa: What about externally – have there been any concerns raised?
Peter: Nothing yet but we will continue to monitor it very closely.
Lisa: What is your biggest success to date?
Peter: Traditionally marketing has been a top-down exercise but that is reversed in social media. As a result our biggest success has been the way we have reconfigured our entire marketing activity to start with the consumer and not the product. This consumer-centric philosophy has improved our overall marketing and communications. We truly now have an consumer engagement platform.
Lisa: What has been your most serious problem?
Peter: Getting employees on board when they can’t access all social media sites from work at this point. We are very fortunate to have a visionary CEO who has embraced our digital strategy and let us “get our hands dirty” before we had all the answers and who has given us permission to fail if necessary.
Online Consumer Health in Jordan: An Interview with Dana Mahadeen
I met Dana Mahadeen, an English Language Instructor at Balqaa Applied University in Salt, Jordan with a background in e-learning. We ended up chatting, not about e-learning, but about how people in Jordan use the Internet for health information. She told me that not all Jordanians use the Internet. Internet use is 18.2% of Jordanians as of March 2008 and 24.5% as of August 2009 according to a different source. I could find no data about use of the Internet for health. Dana told me about health Web sites in Jordan and her own experiences.
While there are health Web sites in Jordan, most are government-operated although there are some private sites. Some of the English language ones Dana knows are http://www.ncd.org.jo/index.php?option=com_frontpage&Itemid=1, http://www.jfda.jo/en/default/, http://www.khcc.jo/, and http://www.moh.gov.jo/MOH/En/home.php. She said that there are other sites in Arabic, such as http://www.6abib.com/, but questioned how accurate their information is. One of the Arabic ones she uses is http://www.sehha.com/. Mostly she relies on American sites like the Mayo Clinic. Dana said that she knew about the Arabic sites because she has a friend suffering from diabetes and cancer. She tries to keep up with the news about these diseases, to understand the conditions better, and to help her friend at the same time. She went on to say that she has used these sites for herself during her pregnancy and when her children are ill.
I asked Dana why she relies on Mayo Clinic’s website instead of the Jordanian ones. She responded, “It is very user-friendly and I guess I just like the site. I have also used WebMD.” I asked if she had heard of anyone writing a blog about their illness, to which Dana responded, “I can’t say I have, but I have heard of people writing about their weight loss.” She went on to say that obesity is a problem there, not to the extent of the problem in the US. They “are seeing more 10+ year old children getting heavier and heavier and I guess we are headed the way of the US. Don’t get me wrong, most Jordanian adults are a bit on the chubby side but not obese. It is a matter of food choices: Jordanian food is naturally rich and, well, fast food is quite popular.”
I asked if heart disease was common as a result of the rich food and Dana responded, “Strange that you should ask. My husband is a Cardiac Surgeon and he is very busy” (40% of deaths in Jordan are caused by cardiovascular diseases, according to Health Minister Nayef Fayez.) To my final question about her own health seeking behavior with a husband who is a doctor, Dana said, “I am always asking my husband questions and I am always looking online. I like to know as much as I can. The Internet is a great tool.”
Stories that Enhance Health Website Design: If It Helped Them It Might Help Me Too
Stories can enhance health websites because they resonate with health information seekers, who find support and encouragement from the experiences of others like them. Two excellent examples are Weight Watchers’ Success Stories and Livestrong.org’s Survivorship Stories. Both sites include extensive libraries of well-written stories about people’s experiences losing weight and surviving cancer, respectively.
Because of the effectiveness of stories in health websites like these, I challenge my Online Consumer Health students to consider how the inclusion of stories can enhance the websites they design in class. In one assignment, they first review the purpose, length, transparency of authorship, writing style, and perceived accuracy of stories on health websites. Then they either write or reuse stories from other websites for their own sites.
In my constant search for examples to use in class, I came across the stories in RediscoverYourGo. I contacted the developer to learn about the planning and design of the website, particularly how the decision was made to use stories.
“I can do anything I want, now. I would say I’m ‘back to normal,’ but I didn’t know ‘normal’ for years. I would say I gained back 15 years or so. It’s really, really good.”
I spoke with Simon Lee, CEO of Lee-Stafford on February 8, 2010. RediscoverYourGo was developed for a medical device company, Smith & Nephew, that manufactures parts for hip and knee implants. On the home page, “stories” is one of 4 tabs on the left and 3 links to stories are featured on the lower right next to “Learn from real patients who have rediscovered what it means to live pain free.” The “stories” tab leads to a list of the replacement products headed by, “Real people who have rediscovered their go.” Each replacement product has story snippets from people who have had surgery to implant that product (example to the left). The story snippets are brief, first-person quotes and they include the name (generally the first name and last initial but in some cases the full name), city, and product, illustrated by a photograph. Rather than use a headshot, many show active poses and look like they were taken informally, not by a professional photographer (in contrast to the posed “after” pictures on Weight Watchers). There is some duplication, with some people appearing in more than one category, presumably because the person has used multiple products. The first person quotes were extracted from a letter or interview with, as Simon said, “100% real patients.”
Selecting a snippet leads to a longer story in the third person about the person’s experience with pain, learning about and contacting the surgeon, undergoing the surgery, recovering, and developing a post-surgery active lifestyle. The header includes more about the person, including occupation, a larger version of the snippet photograph, and a picture of the replacement product. Many of the stories identify the storyteller’s age, and the photographs indicate age as well. Stories are more likely to resonate with someone who identifies with the storyteller, which, in this case, might be because of replacement product, age, or recreational activity. Weight Watchers facilitates this by sorting stories by gender, age, or total weight loss and inviting a viewer to “Read about someone like you”.
The use of stories is “a toe in the water” to create an online community for patients with Smith & Nephew products. What lay behind the use of stories, Simon told me, was the desire to create a “patient ambassador network” to capitalize on patient stories. Often patients with debilitating pain became advocates for the surgeon who “fixed” their problem: they wrote letters thanking the doctors who performed their replacement surgery for giving them their life back and were eager to discuss their outcomes with others.
Simon believes the more open use of social media or forums was not possible because of concerns about monitoring, disclosures and privacy, a concern shared by all the major orthopaedic and spine device companies. Highlighting patient experiences on a website seemed the best alternative.
The overall website design goal was to modernize the brand and create more youthful and non-surgical-looking site as befitting one of the big growth areas: patients 45+. Previously, the primary target audience was 65+. The focus on the new demographic is because a growing number of younger people are seeking partial replacements. The potential exists that they will then become loyal customers to the brand and their surgeon. Simon believes that healthcare is local and that decisions to choose care are “based on who can treat me and where can I be treated.” Furthermore he believes that “educated patients are happy patients and happy patients are advocates for the doctor who ‘healed’ them.”
Health Stories: Triggers for Seeking Health Information Online
When you design a health Web site, the most important questions to ask are how and why someone will come to your site. To help my Online Consumer Health students answer these questions for the sites they design, they create personas and then develop scenarios that start with the persona’s trigger for going online and continue with the persona’s ongoing education and support needs.
Triggers can be related to the calendar, the news, an existing health problem, a concern about a potential health issue, or a new diagnosis or prescription. Triggers can occur because of the time of year: searches for “diet” spike on the first week of each new year and crash a week later. Bill Tancer reported on the frequency of health searches related to a diagnosis of a famous person in the news. The most common trigger is the need to learn more about one’s own or a loved one’s health issue. Susannah Fox said, “A medical crisis flips a switch in people.” With 52% of online health inquiries on behalf of someone else, a loved one’s medical crisis is often the trigger that leads to health searches.
Jill D. is a researcher from New Hampshire whose mother was diagnosed with a gastrointestinal tract tumor. Shocked and worried when she heard this, Jill wanted to immediately learn more. She needed to understand what the diagnosis meant for herself and to help her mother understand it; she also needed to help her mother evaluate treatment options. Jill doesn’t live near her mother so couldn’t go with her mother on her next doctor’s appointment. She would have felt comfortable asking her own doctor questions, but didn’t have an appointment otherwise scheduled. So she went online.
In June 2006, my (then) 74-year-old Mom was told that she had a gastrointestinal tract tumor that was probably cancerous. As soon as I heard, I wanted to find out what treatment options would likely be offered to my Mom as well as the statistical likelihood of survival.
I looked online for information because I’m not in my doctor’s office often enough to be able to ask my own physician, “Say, what do you know about tumors of the GI tract?” Also, I wanted to browse through written information at my own pace rather than trying to listen closely to a quick data dump.
I looked online over the course of several evenings. I know that the trustworthiness of information on any given website is highly dependent on the source of the information, so I concentrated on sites provided by highly reputable medical establishments such as the Mayo Clinic and the US National Institutes of Health.
By far the most useful information for my purposes was available at the National Cancer Institute. The reason I found it so helpful is because I was able to read the same article in two versions, one intended for patients and the other for medical providers. I am not a medical provider but I am used to reading dense, scientific journal articles. Thus I carefully went through a page entitled, “Gastrointestinal Carcinoid Tumors Treatment“.
I learned that these tumors tend to grow very slowly and, if the tumor is localized, the 5-year survival rate is 70 – 90%. My Mom was wondering if she would be subjected to radiation treatment but this article indicated that radiation is rarely helpful for these types of tumors so I told her that her oncologist would probably not prescribe radiation. Further, I found out that tumors smaller than 1 cm rarely spread to other areas (metastasize) but that tumors greater than 2 cm frequently metastasize; this told me that my Mom’s 1.6 cm tumor could go either way.
None of the information in the preceding paragraph was available on the page intended for patients, so I was grateful for the chance to read the pages intended for health professionals. I had to look up a few words, such as “telangeictasia” (the formal term for spider veins, one of the potential signs of GI carcinoid tumors). Despite my incomplete medical vocabulary, I felt reasonably confident that I understood the article and wouldn’t misrepresent the information when relaying it to my Mom.
This story has a happy ending because my Mom underwent surgery to successfully remove the tumor and—even better—the tumor was not at all cancerous. Six weeks after the operation my Mom was feeling healthier than she’d felt in years and went off on a long car trip.
Blogging for Health: Survey about Why People Blog about an Illness
Pam Ressler, RN, BSN, HN-BC, one of my students, and I are researching why people choose, or don’t choose, to start and maintain a blog about a health condition. We would appreciate your answers to these questions. We will publish the results of our study here as well. Please respond in a comment or email me.
If you have a blog:
When and why did you start your blog?
What do you see at the primary reason(s) you continue blogging?
How often do you typically post?
What types of feedback do you receive? How many comments do you typically get to each post?
Do you know how many unique visitors you have during a particular time period (say 2009)?
Do you do anything to promote your blog or attract new readers?
Do you use your real name in your blog?
Do you read other blogs by people with health issues and, if so, which and why?
Have you shown your blog to your doctor or other healthcare professional?
If you don’t blog:
Why didn’t you blog about your illness? Did you consider blogging about your illness?
What do you see as the primary reason(s) you didn’t blog about your illness?
If you have discussed your illness with individuals besides your healthcare team, how have you done so (phone, email, in-person support groups, discussion boards, etc.)?
Do you read other blogs by people with health issues and, if so, which and why?
If you know of someone who blogs about their health, please forward this to them or let us know how to contact the person.
Every Person Has a Right to be Healthy: An Interview with Susan Harrington from the Boston Public Health Commission
Susan Harrington, the assistant director of communications at the Boston Public Health Commission, was a guest lecturer in Online Consumer Health. From infectious disease to violence prevention and nutrition, Susan promotes the work of the Commision’s 33 program areas. Using a combination of traditional and social media, like Twitter, Facebook, and YouTube, Susan designs targeted social marketing campaigns to prevent disease and protect the health of Boston’s residents. I interviewed Susan about her recent initiatives to improve Boston’s health.
Lisa Gualtieri: During your guest lecture, you talked about some of the successful initiatives to reach teenagers with health messages. Which campaign was most successful and why?
Susan Harrington: The Boston SexED campaign. We went directly to Boston teens to ask them what was important to them. They didn’t just inform the campaign; they developed the concept, actively worked to get the word out, and helped their fellow teens answer these important questions. The Facebook conversations were lively while informative. We had a great reach in terms of the number of teens that either saw the campaign or participated in it. We continue to look at the hard data to see if there is any decrease in the number of sexually transmitted infections among teens.
Lisa Gualtieri: H1N1 is obviously on many people’s minds. What are the types of information you are providing? Can you also talk about your use of twitter to provide updates on line lengths at clinics?
Susan Harrington: We are providing everything there is to know about the flu, both seasonal and H1N1. This includes how to prevent the flu, the difference between the cold and flu, what to do if you get the flu, vaccine safety, and clinic information. As much as we are trying to get this important information out, we are always listening to what questions people may have. We develop videos and information guides to address their questions. In fact, our flu prevention campaign and video, “Talkin’ ‘bout the Flu”, is being replicated in other cities and counties nationwide for its innovative approach to the topic. In addition to traditional marketing, we used Facebook and Twitter to relay our message, garnering attention across the globe. Speaking of which, the Boston Public Health Commission is hosting a number of H1N1 flu clinics throughout the winter. We have used Twitter and Facebook to provide updates, including what people should bring, line lengths, etc. People responded back to us saying they checked online before they walked out the door, or even on their phone, so they were fully informed when they got to the clinic. They helped to retweet our posts and even posted some of their own. We love all of our Twitter followers and Facebook fans.
Lisa Gualtieri: What are the most common languages used in Boston? Why did you decide to use a translation program instead of providing translations of key information?
Susan Harrington: Boston is incredibly diverse. In addition to English, the top five spoken languages in no particular order are Spanish, Vietnamese, Chinese (Mandarin/Cantonese), Haitian Creole, and Portuguese. All of our materials go through a rigorous translation process. First, if there are funds available, any document is translated by a native speaker at a translation company. The document is then reviewed and edited by a native speaker on-staff for accuracy. (If there are no funds, then the native speaker on-staff completes the translation and is a reviewed by a second native speaker.) We tried to provide the same quality of translation at one time for our website. However, because the website changes daily, it is difficult to update the translated versions at the same fast rate. Also, we wanted to provide a larger range of languages, such as Albanian and Russian. We reviewed multiple online translation mechanisms and our on-staff translators were a key component in this process. Machine translation is never 100% accurate, but we hope to provide some translated content. However, our key information, such as fact sheets, brochures, etc., are all translated by humans. We don’t want to lose anything in translation and lose the trust of the residents we are trying to serve and protect.
Lisa Gualtieri: Have you gotten feedback on the translation services?
Susan Harrington: For the most part, the human translation is accurate and easy-to-understand. But, just as any two English speakers may use different expressions, so too with non-English speakers. For example, a Spanish-speaker from Puerto Rico may have different expressions than someone from Guatemala. We aim to use the language and expressions most common in Boston, but there are always differences.
Lisa Gualtieri: With no budget constraints, what would you do next?
Susan Harrington: Wow, what a question. In my role in communications, I have loved bringing attention to important issues, starting the difficult conversations, and hopefully improving the lives and health of my fellow Bostonians. If money were no object, I would expand the number of marketing campaigns to focus on overlooked projects and extend the great campaigns that we have had. Often times though, it’s more than about money. It’s about getting everyone involved in an issue because, even though they may not think it, they can make a difference. Every community, every person, has a right to be healthy.
How Celebrity Doctors Use their Online Presence to Communicate with Healthcare Consumers
Erin Dubich, a graduate student at Tufts, and I are doing a study about “celebrity” doctors who use their online presence to communicate with healthcare consumers.
Please help us by telling us which celebrity doctors you believe have an effective online presence and why: Dr. Gupta, Dr. Oz, Dr. Phil, Dr. Richard Besser, or another? We are interested in those who have Web sites, blogs, etc., unlike, say, Dr. Ruth, a celebrity doctor whose presence is not online.
The characteristics we are looking at are:
Basis of reputation (credentials, job, books, TV, etc.)
Website(s) featured on
Where seen besides website (TV, radio, books, syndicated column, etc.)
Topic(s) of advice/articles (general health, sexual health, etc.)
Type(s) of advice (ask the expert, interviews, etc.)
Why is the doctor an effective health communicator (timeliness, credibility, topics, reach to common concerns or fears, etc.)
If you have examples of celebrity doctors who you believe are not effective or exploit their fame or their position, we would like to hear that too.
Please post a comment or email me. We appreciate your help and will post our compiled results and conclusions.
Lisa Gualtieri is Assistant Professor at Tufts University School of Medicine in the Department of Public Health and Community Medicine. She is Director of the 
Lisa Gualtieri 
Recent Comments