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One or many; same or different? Optimizing a social media presence

MortonsNeuromaOne 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, and I looked at their website.
The Center for Morton’s Neuroma uses many forms of social media. The website displays an array of icons in the upper left for Facebook, Twitter, Google+, Pinterest, LinkedIn, and YouTube. Placement in the upper right is more typical, and, since they are only icons, there is no hint as to what you will see when you look at their social media sites. Besides the icons, there are tabs for testimonials and blogs. It seemed like a lot of social media!
The use of multiple forms of social media may increase the likelihood that someone finds the site through search or happenstance. At the same time, people are unlikely to follow all of these unless the content is quite different. This was confirmed by the number of likes, sharing, etc. that I observed. My overall sense was of considerable overlap and duplication.
The site has a link to Yelp but no reviews there, which was surprising since the site includes some patient testimonials. When I used “foot pain” for a search term and “Framingham, MA” for the location, they didn’t come up as a search result or paid ad, the former because they have no reviews, I suspect.
While how to find a provider has not been significantly advanced by social media, I wonder if the effort that went into social media could be better spent on a presence on review sites like Yelp, including asking subsequent people who want to provide a testimonial to do so on Yelp or Facebook.
Back to my original question: one or many; same or different? Most practices use too little social media or rarely update, but, for this center, my advice is fewer social media platforms with more distinct content. Repetition of content is never advantageous, but tailoring content to different platforms can be effective. My overall advice is to focus on more enticing use of Facebook and perhaps one or two other platforms; to encourage patients to provide reviews on Facebook and Yelp and remove the testimonial tab; remove the blogs and place that content elsewhere; and, finally, use likes, shares, and analytics to determine the types of content that are most popular and focus on those. Once this is all cleaned up, the center could consider an Ask the Expert column that people could submit questions to and that could be a way of linking to some of the more buried content.
Agree or disagree with my analysis?

March 21, 2016 at 10:00 pm Leave a comment

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

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 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, or through Twitter @CARE_study and Facebook (Cancer Survivors Heathy Eating – CARE Study).  Principal Investigator: Fang Fang Zhang, MD, PhD, Tufts University

February 10, 2016 at 1:12 am Leave a comment

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 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.


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.

August 12, 2015 at 7:01 am Leave a comment

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!

August 12, 2015 at 6:12 am Leave a comment

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:

July 18, 2015 at 2:35 am Leave a comment

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!


November 18, 2014 at 5:42 am Leave a comment

How to plan an emergency preparedness video for a university

Most people don’t think about the fine balance between making a point and entertaining people. Mark Robertson, Emergency Preparedness Coordinator, University of Nebraska – Lincoln (UNL), obsesses about it. He created a videos series for UNL Police on emergency preparedness. When preparing a lecture for Designing Health Campaigns Using Social Media at Tufts University, I looked on YouTube for examples of emergency preparedness videos from universities and started watching his. The animations are short, funny, and have a clear message.
Rather impressively, Mark creates the animations himself using GoAnimate in about an hour. He does the voice himself generally – which is why he sounded familiar when we spoke by phone. I asked him for advice for my students, and then realized this might be of broader interest.
Mark’s advice for planning emergency preparedness videos:
  1. Know what is the one message you want to get across.
  2. 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.
  3. Make your point and find a balance between making your point and entertaining people.
  4. Use sample audiences before publishing to make sure you aren’t hitting the wrong nerve and your point comes across.
  5. It is a challenge to get people’s attention for too long. Start out and pique people’s interest, and keep the video short.
  6. Even how you promote a video is important. Say something that piques their interest to get them to watch.
  7. Finally, be careful about your central characters because, if well-received, you will be stuck with them and may regret some of their eccentricities.

November 13, 2014 at 2:21 am Leave a comment

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.

Sandra describes how she conceived of the SmartWatch Mirror and how it works:

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.

September 24, 2014 at 6:41 pm 2 comments

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 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.

September 23, 2014 at 9:01 pm 1 comment

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: 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.

September 5, 2014 at 6:22 am 1 comment

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.

July 22, 2014 at 7:44 am Leave a comment

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.

June 11, 2014 at 5:49 pm 1 comment

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.

ImageBeth (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.

CancerForward-Website-young-adult-cancer-survivor-Tony-QuinnWhen 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.

February 19, 2014 at 2:46 am 2 comments

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 Easy to do, but not all dental Stepka Facebookpractices 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.Stepka signI 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.Stepka twitter

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.


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.


My overall impression is very positive. Without knowing the Stepka photopractice’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.

February 5, 2014 at 9:38 am 2 comments

Google Glass: First Impressions and Posing Questions

IMG_0498Nerd 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.

July 1, 2013 at 10:22 pm Leave a comment

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.

June 8, 2013 at 10:09 pm 2 comments

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.

November 5, 2012 at 8:09 pm 6 comments

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
As a taste of my talk, for affinity I said that the close, dare I say intimate, relationship many people have with their smartphones, has an impact on health searches. Affinity in combination with the greater privacy possible on a small screen are likely why people are more likely to search for information about sexually transmitted diseases and mental health. For context, I spoke about the role of the contextual information people see, hear, feel, and remember and how that impacts mobile health search; and how external information and data from sensors, such as weather, location, time of day, and blood pressure,  impact personalization and tailoring. I also challenged my audience to imagine if public health had the same resources as eCommerce for big data and predictive analytics. Instead of helping Target sell more products, timely and relevant information could help people live healthier lives.

My slides are posted here. Many thanks to Susannah Fox and John Mangano for sharing Pew and Comscore data respectively.

October 31, 2012 at 8:30 am Leave a comment

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.

September 5, 2012 at 12:59 am 5 comments

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.

May 14, 2012 at 1:12 pm 21 comments

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.

February 28, 2011 at 9:44 pm 5 comments

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:
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.

July 12, 2010 at 5:38 am 1 comment

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.

May 6, 2010 at 8:30 am 1 comment

Web Strategies for Health Communication

I am teaching a new course, Web Strategies for Health Communication, and for it I am developing a number of case studies about the Web strategies healthcare organizations develop and how the strategies evolve. Families for Depression Awareness and are almost done. They share the problem of too few people (paid or volunteer) with too much to do. Ritu Gill, Staff Member with Families for Depression Awareness, said, “We started a Facebook page hoping it would bring more people to our Web site but we don’t think it’s working.”  They use twitter but have 1 update so far.

The next cases are,,,, Association of Cancer Online Resources (ACOR),, and ABC News Health. Of course there’s Please give me suggestions for other organizations, especially ones with particularly creative uses of the Web.

May 23, 2009 at 8:14 am 1 comment

Job Hunting? Think Twice about Revealing your Hobbies

If you are sending out resumes, or keeping one around just in case, think twice about having a personal section at the end that includes your hobbies. I read a friend’s resume who is job hunting and told her to remove her hobbies because it was easy to see how what she wrote could be misinterpreted and held against her by an employer. It was nothing exotic, just serious artistic accomplishments.

Listing hobbies on a resume is often promoted as a way to catch the eye of someone with a shared interest or stand out from other applicants. Since hobbies showcase your personality, they can add a personal touch or highlight some additional skills you have.

That all sounds good, but employers can read anything the wrong way:

If you list athletic activities, such as marathon runner, it makes you sound healthy and active but employers are concerned that your training schedule is more important than their needs.

If you list artistic pursuits, such as sculptor, they worry that you work only to support your artistic passion.

If you list volunteer activities, such as working in a homeless shelter, you sound like a wonderful person but scheduling conflicts may arise and your choice of organization might be different from those supported by the employer.

If you list activities revolving around children, such as soccer coach, you raise concerns about your priorities.

If your hobbies involve books, movies, music, or gardening, the reaction might be “So what, doesn’t everyone?” Unless you list karaoke asyour hobby, inducing fear of what will happen at the next company party.

I knew someone in school whose hobby was reading the dictionary. “Weird,” you might reasonably say. I saw his name years later as an award-winning crossword puzzle maker – but it’s a hobby that would raise eyebrows when applying for most jobs. What benefit is there to include these activities – and there may be a cost. Besides which, there may already be too much information about you online, according to the warnings about what current or potential employers learn from your Facebook profile or your tweets.

Redacting the hobbies from your resume may not be enough – think twice about revealing too much in your internet profiles. And then wait until the interview – or better yet the first day on the job – to reveal your non-professional inclinations.

July 13, 2008 at 6:54 pm 6 comments

10 Things You Can Do To Be a Brilliant Orator

If you are going to give a talk, you might as well be a brilliant orator, a phrase that has been used to describe Julius Caesar, Barack Obama, and many in between. Here are 10 things you can do to improve your oratory performance:

  1. Have an interesting message to convey. It sounds simple, but, if it was that easy, why doesn’t everyone do it?
  2. Have a conversation with your audience. Orating does not mean lecturing or preaching. It means conveying a message to people. Since each person took the trouble to be there to hear you, talk to him or her.
  3. Do not read your slides or notes. If you do, I guarantee someone (if not many) will think, “I can read that myself so why am I listening to this person?”
  4. Don’t say “umm”. Pause instead. Or breathe. (Well, always breathe.)
  5. Look friendly and approachable. You know how people like babies and cute animals? You want people there to like you because they will get more out of your presentation.
  6. Use self-deprecating humor, which will never offend people. Surely there is something funny you can say about yourself!
  7. Tell a story to illustrate to illustrate your point. Stories tend to be memorable and thus a good reminder of your message. They are also fun to tell and if you are having fun your listeners are more likely to as well.
  8. If someone asks a question, don’t be nervous because you are the expert. Worst case , if you don’t know how to answer the question, answer a different question that you do know the answer to that is at least related.
  9. Have a plant in the audience to ask a question that you want to answer. This way you will look good and you avoid having to wonder why no one asked a question. Usually after the first question you will get others (see #8).
  10. Tape a practice session and actually watch or listen to it. It is very painful to do! A few years ago I gave a talk that was streamed on the internet and it took me 3 months before I could watch it, but it was pretty good except I said “umm” too much (see #4).

March 15, 2008 at 7:31 am 4 comments

Lisa Gualtieri, PhD, ScM

Lisa GualtieriLisa Gualtieri is Assistant Professor at Tufts University School of Medicine in the Department of Public Health and Community Medicine. She is Director of the Certificate Program in Digital Health Communication. Lisa teaches Designing Health Campaigns using Social Media, Social Media and Health, Mobile Health Design, and Digital Strategies for Health Communication. Contact Lisa:


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