If you have a Fitbit or other activity tracker and stop using it or upgrade, what do you do with the old one? There are few options to recycle or resell it. Enter RecycleHealth.
My hypothesis is that the people who are least likely to own wearables are those who might benefit most. I am requesting donations of unused wearables through RecycleHealth and then giving them a second life by using the refurbished, donated wearables in pilots with populations who rarely purchase and are unlikely to afford them.
RecycleHealth was described in the Boston Globe business section: http://www.betaboston.com/news/2015/07/02/recyclehealth-wants-to-donate-that-fitbit-sitting-in-your-sock-drawer/.
What makes an effective emergency preparedness video for college students? First, students have to want to watch it, then they have to like it enough to keep watching it, and finally they have to learn from it.
My students in Designing Health Campaigns Using Social Media conducted needs assessments that showed that videos needed to be short – generally under 1 or 2 minutes – and funny – but appropriately so. They also had advice from Mark Robertson that videos need a clear message and call to action.
Based on the plans they created, with goals, needs assessment, and competitive analysis, and having their choice of topic and tool, students created what I thought – and the class thought – were really effective videos. I was impressed not just by how well they handled their topics but by the creativity and unique approaches they used.
If you have feedback for them, please write a comment!
- Annaick and Rhiana: Are You Prepared? Active Shooter
- Annie: Emergency Preparedness: Student Caught in Meteor Attack
- Avneet: 8 Steps for the Perfect Emergency Kit
- Christina, Emily, and Gus: How Would You Prepare for a Hurricane?
- Nikhil: Dental Emergency Part I and Dental Emergency Part II
- Know what is the one message you want to get across.
- Humor is popular but it is dangerous too. If you are using humor, be certain that no one will take offense. Do not poke fun at students, faculty, or staff.
- Make your point and find a balance between making your point and entertaining people.
- Use sample audiences before publishing to make sure you aren’t hitting the wrong nerve and your point comes across.
- It is a challenge to get people’s attention for too long. Start out and pique people’s interest, and keep the video short.
- Even how you promote a video is important. Say something that piques their interest to get them to watch.
- Finally, be careful about your central characters because, if well-received, you will be stuck with them and may regret some of their eccentricities.
Smart refrigerators, smart thermostats, smart toothbrushes – everyone is trying to create new digital health markets. While intriguing, it is sometimes hard to see how they will improve my health or quality of life. Until now: Sandra Rosenbluth, a student in Mobile Health Design, is revolutionizing the mirror.
Everyone has a mirror; they vary in size and quality, but none are smart until now. And smart in a way that might change how people think about diet and fitness, moving away from weight or BMI as a measure of success or failure.
I was scrolling through my Facebook news feed one day, when I read a status that truly horrified me. A friend had written, “Since I started working out, I feel better and look better, but my weight on the scale hasn’t gone down, and I feel really sad.” This statement really stuck with me, even more so when she admitted she was addicted to her scale and couldn’t possibly throw it out. Therefore, when the time came to think of a smart device for my Mobile Health Design final paper, I designed the ShapeWatch Mirror.
The idea behind the ShapeWatch Mirror is straightforward: You can’t always rely on a scale to tell you whether a new diet or exercise plan is working, so rely on your mirror instead. The ShapeWatch Mirror has the ability to take a photo of the user, which it then sends to a phone or tablet. A contour outline is drawn around the outside of the user’s body, making a trace of his/her shape. That contour line can be merged onto previous outlines, showing the user exactly where his/her shape has changed. In other words, while the scale might show the same number, the contour lines can show loss of fat in the midsection and gain of muscle in the arms.Using techniques I learned in Mobile Health Design, I was able to show how the ShapeWatch Mirror was truly aimed at its target audience by creating sample personas of potential users. By comparing the mirror to other smart devices, I was able to show how it utilized previous devices’ strengths, like tracking, while discarding weaknesses, like relying on weight as the sole measure of progress. Together, these techniques helped me design a strong product. To learn more about the ShapeWatch Mirror, read my full paper.
The ALS ice bucket challenge, better known as #ALSIceBucketChallenge or #icebucketchallenge, was almost the perfect storm for viral fundraising. In my course, Designing Health campaigns Using Social Media at Tufts University, we analyzed why the challenge went viral.
Not surprisingly, given its popularity, my students had all heard about it and watched challenge videos. About half had done it. Some researched amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, and including what they learned in their videos. While my students’ videos were undoubtedly shared, they did not have millions of views. The three most popular videos that I found in a search each had over 19 million views. Most popular was The Simpsons, an animation. Second was a compendium of fails, which included people who were supposed to pour water on someone and accidentally poured it on themselves. Third was Bill Gates, pulling the rope of a device he designed to dump water on himself.
The challenge videos were not only popular and entertaining, but resulted in a significant increase in donations. The ALS Association has received over $100 million from more than 3 million donors. They raised only $2.8 million in the same period last year hence had a 3,504% increase. Notably, the challenge was not started by them but by a person with ALS, 29-year old Peter Frates. A Boston-area resident, he posted his ice bucket challenge video on July 31 and the challenge spread mostly through the month of August 2014.
Time Magazine reported, “The Ice Bucket Challenge has been a social media phenomenon, grabbing the attention of millions of Americans including many celebrities and political figures. Some have speculated that it might forever change the way charities approach fundraising.” Bearing out that it was a social media success was not only video views but tweets. There have been more than 4.2 million tweets about the challenge, peaking at 1,877 tweets per minute.
An analysis of 1,500 randomly selected videos found that 20% of participants took the challenge indoors; 30% of participants were female; in 53% water was dumped by someone else; 26% of participants didn’t mention ALS; and only 20% of participants mentioned donating money. Given that many people used #icebucketchallenge without ALS in the hashtag, they may not have even connected the challenge to the disease. This is similar to Movember, which many men, including two of my students, participated in without knowing it was for prostate cancer and other men’s health issues.
The main criticism of the challenge was that it is an example of “slacktivism” in which people are more interested in bringing attention to themselves than to a cause while ostensibly participating. Other criticisms were that so many participants didn’t mention ALS, the waste of water, especially where there are droughts, and the lack of information about how the windfall will be used. In fact, the detailed analysis of where the ALS Association spends money was in HealthNewsReview.org. Personally, what I thought was missing was more information about the disease itself, including advice on how to help people with ALS and their caregivers.
The main benefits are the increase in donations and the greater awareness of ALS. Possible side effects are that many people shot and uploaded a video for the first time, making it more likely they will do so again, and that some participants may have engaged in fundraising for the first time. However, does this mean they are more likely to again?
Undoubtedly every health organization is hoping to capture some part of the success of the challenge to increase donations and awareness of their health issue. The copycats are emerging, an example of which is Doubtfire Face for Suicide Prevention: Started by a supporter of the American Foundation for Suicide Prevention, it honors the late Robin Williams by replicating his pie-in-the-face scene from “Mrs. Doubtfire.“ Another one also uses a pie: Eat Pie for HI (Hyperinsulinism is abbreviated HI). And there are others, many involving a video and hashtag.
My students and I discussed why the challenge’s viral nature may be hard to replicate: fatigue, lack of novelty, and the difficulties of orchestrating virality. Fatigue is already occurring with the ice bucket challenge even though new videos are still appearing, albeit at a much slower rate. People like novelty and have limited attention spans, which is why the Livestrong yellow wristband spread until a rainbow of bracelets for every cause saturated the market. Another reason that the challenge may be hard to replicate is that it was not planned by the ALS Association but was something a person with ALS did that caught people’s attention. Most of what goes viral in social media is not orchestrated.
The challenge was almost the perfect storm. The factors contributing to this were:
- The 24-hour time period to complete the challenge so little time for procrastination
- Hot summer weather made it fun and refreshing to complete the challenge, reminiscent of childhood fun
- Many people are on vacation, or have more flexible schedules, in August when it peaked
- The challenge had very simple rules, low cost, and low risk making it easy to complete
- At the same time there was a little vulnerability in appearing in a video and doing so under sub-optimal but not embarrassing circumstances
- It could be done by all ages and abilities
- The challenge connected people through the challenging process as well as the sharing of videos, in fact, many did the challenge with another person pouring or in a group with friends or colleagues
- There was room for creativity, humor, and personal expression in how the challenge was completed yet also room to make a statement about ALS
- ALS is a disease affecting as many as 30,000 Americans so most people participating in the challenge probably don’t have ALS or know anyone with ALS and can participate in a light-heartedly way that might not work for a more common or better known disease.
The ALS Association didn’t provide instructions, but did offer their thanks for donations and posted two warnings. One was that the challenge “may not be suitable for small children, the elderly, anyone in poor health or animals.” The other suggested thoughtful water usage.
What is next? As one of my students questioned, will the challenge migrate to the Southern Hemisphere as cooler weather arrives in the US? Can all these factors come together again and can a viral campaign be planned by a health organization? Probably not, because so many factors came together and contributed to the challenge’s success. Given the likelihood that health organizations are planning campaigns, they may achieve better success by working with, and supporting, the efforts of individuals like Peter Frates. My hope is that new campaigns have a great focus on awareness and prevention, and on how to help people who have a disease like ALS and their caregivers, not just on donations.
Preventing Workplace Bullying: An Interview with Greg Sorozan, Massachusetts State Coordinator of The Healthy Workplace Bill
“Bullying is part of the spectrum of abusive behaviors that exist in this world. I know about child abuse, child neglect, sexual abuse, domestic violence, substance abuse, and now adult abuse at work. They all work together to create many, if not most, of the health and mental health problems we have,” said Greg Sorozan. Greg is President of SEIU/NAGE Local 282 and Massachusetts State Coordinator of The Healthy Workplace Bill, working to prevent bullying in the workplace. I read about his work in a Boston Globe article and his MA legislative activity and asked to interview him about his work as a patient activist.
Lisa Gualtieri: Why did you become a patient activist?
Greg Sorozan: I was bullied at work more than 20 years ago.
LG: Was there a specific incident or series of incidents?
GS: The mistreatment caused one half of the Work Unit to quit. Productivity went down. My job duties (Sr. Training Coordinator) were changed almost daily. Resources and time were denied me. My health started to be effected. Sleep became difficult.
LG: What were the steps you took?
GS: My Union had no contract language to deal with the form of discrimination and abuse that was being perpetrated. Because I was in the rare position of knowing everyone in the administration of the large state agency, I forged alliances with people who would listen and who had a vested interest in the success of our Unit – in Legal, Policy, Finance, IT.
LG: Were there barriers such as stigma or privacy at specific points that you had to overcome?
GS: “Chain of Command” was the first and foremost barrier. Orders came from the Director/Bully. To not follow these orders was tantamount to insubordination. Only when “orders” were shared with other parts of the agency did Administration look differently upon this person. An example is how I was brought in, late, to consult with the “Developers” (Deloitte & Touche) on their newly designed Training Registration System. They wanted my “input”. I told them it would not work and why. I then asked them why they had designed it in the particular way. I was told that my Director had been insistent upon it. My response was: “This is why it is wrong”. The project was never completed. It cost the Commonwealth about $1 million in developer’s fees. There were other projects-all ruined by this person.
LG: What have you done that has the greatest impact?
GS: I am a social worker at heart. I’ve allied with the two most influential people in America on the topic of Bullying in the Workplace: Gary Namie, Ph.D.,(The Workplace Bullying Institute, Bellingham, WA.) and Professor David Yamada, Suffolk Univ. Law. (Minding the Workplace blog). With their guidance and help I found language to deal with Bullying in the Workplace. I negotiated that into our Contract Bargaining Agreement with the Commonwealth of MA., and have helped hundreds of people over the course of the last five years. Concurrently we have drafted legislation and have introduced that legislation for adoption into Law. We will not stop until the Healthy Workplace Bill is passed. You can ask any of the 5000 Healthy Workplace Advocates who have joined with us in working to get the law passed.
LG: What are the mechanisms you use, such as speaking, writing, and social media, for communication and outreach?
GS: We have developed a core team of talent who reach out to the public via social media, the web, and person to person. Meetings, training workshops and informal gatherings continue to be planned. Our website: www.MAHealthyworkplace.com is the primary attractor of people looking for help and understanding of what they have been experiencing in the workplace. We are continuing to involve Advocates in activities designed to spread awareness and educate others – including their legislators.
LG: What are the primary sources of satisfaction you experience related to your activism?
GS: My affiliations with Gary Namie, David Yamada, Deb Falzoi, and others (my NAGE brothers and sisters) who help me to keep my focus in a violent world.
LG: What are the primary difficulties or frustrations you experience related to your activism?
GS: We’ve introduced the Healthy Workplace Bill three times. January 2015 we will do so again. Getting a law passed is not as simple as it appears. Politics does not take a straight line toward enactment. I have several paid lobbyists at my disposal. They’ve given me quite an education.
LG: What do you think could help non-activists voice their innovations and experiences on health care issues relevant to themselves?
GS: My first thought is to develop a website that would serve as an “exchange” for ideas and problem areas. Get people communicating and learning that they are not alone. Develop opportunities for others, with resources, to join/guide/support and help foster needed changes.
LG: What advice would you give to patients who are not currently activists?
GS: It helps your recovery to actively participate in activities that promote positive change.
LG: What do you believe organizations could do to engage non-activists to provide feedback on and promote healthcare innovations?
GS: Develop models for outreach and ideas from the public. Actively solicit responses while understanding that some people are more deeply effected than others by traumatic events.
LG: What could organizations do to more effectively promote initiatives to patients?
GS: Change the “frame” away from patient to more of a “fellow journeyer”.
LG: What do you see as the ultimate measure of your impact in terms of the number of people you reach or the changes resulting from your work in people’s lives, in health policy, and in medical practice?
GS: Gary Namie’s meta-research shows the promise of great savings in health care costs, increased productivity at work, more creativity, and lots of other great stuff whenever people like doing what they are paid to do! I’ve personally seen that all happen, already, with groups I have helped. I believe that Bullying is part of the spectrum of abusive behaviors that exist in this world. I know about child abuse, child neglect, sexual abuse, domestic violence, substance abuse, and now adult abuse at work. They all work together to create many, if not most, of the health and mental health problems we have. I think that our society needs to take a step back and be more civil. Easily said. Makes me think of the search for the unifying particle in Physics. Lots of theories, but at least they are looking for a unifier.
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.