Posts tagged ‘online health communities’
Students in Online Consumer Health at Tufts University School of Medicine design health websites for a topic of interest to them or redesign websites for real organizations. Ellen Langhans, a graduate student at Emerson College working toward a master’s degree in Health Communication, chose the management of narcolepsy for her topic. Her goal was “to create a site for people who live with narcolepsy – both patients and their loved ones alike – to help them manage the disorder,” to provide timely information, and to help site members learn from and connect with each other to thrive. Her final paper details the process she went through, which included the development of four personas and a competitive analysis of four websites: two for narcolepsy, Narcolepsy Network and The Stanford Center for Narcolepsy, and two for diabetes management that had similar goals, Diabetes.com and Take Action. Ellen and I welcome your feedback on her excellent and comprehensive paper.
Diane Aronson is a Special Government Employee, serving as Consumer and Patient Representatives for the Food and Drug Administration (FDA). Working through its Center for Drug Evaluation and Research (CDER), Diane has served on many of its Advisory Committees and has been a standing member of the Arthritis Advisory Committee. She is Past Executive Director of RESOLVE, the National Infertility Association, Past-President of the International Federation of Infertility Patient Associations and the Road Back Foundation, an on-line service that provides education, medical articles and peer-support about the use of antibiotics for the treatment of rheumatic diseases. Diane has also served as a Consumer Representative for the Centers for Disease Control and Information (CDC) and the National Institutes of Health (NIH).
LG: How did you become a health consumer advocate?
DA: I noticed at a young age that I can be compelled to speak up for others when needed and that this ability can lead to making a difference. My style is to listen carefully and provide support and information, especially where issues of safety or risk are concerned. The path to my health consumer advocacy work started as a result of my own medical issues with arthritis, cancer, and infertility. My rheumatoid arthritis wasn’t diagnosed for years after symptoms started in my late teens. The pain and fatigue were discounted by my physician who told me that I looked fine despite some irregular lab results and took no further action to explore what caused the symptoms. What activated me included the consequences of this approach and a desire to help others who struggle to find successful medical treatment. This perspective encouraged me to volunteer to share my experiences and later, led to paid consumer advocacy work and to my current position with the FDA. Despite past complex and challenging health issues, I am grateful to be healthy and very active.
LG: How did you start working at the FDA?
DA: I learned that the FDA was seeking a Consumer Representative for their Arthritis Advisory Committee and so I applied. They are often looking for individuals who can provide a consumer perspective to their advisory deliberations as well as an interest in and ability to assess medical data. The application process is about six months long as it includes a review for any potential conflicts of interest.
LG: Tell me about what you do at the FDA.
DA: I am asked to serve on Advisory Committees to review drugs that may need an additional review of outside experts. Committee Panels most often include physicians, researchers, statisticians, patients, consumers and non-voting industry representatives. For each meeting, panel members are sent information from the company-sponsor as well as the FDA about the drug to be reviewed. A list of questions is also sent to panel members who are encouraged at the meetings to ask questions and, at the end, to vote on and provide opinion about the drug under review. For me, the position requires the combination of the advocate in me, an interest in science and biology, my past medical experiences, the desire to represent a broad constituency of health care consumers and a general interest to review details and solve problems. It is very gratifying through my research and study before meetings, and especially as a layperson, to be able to contribute a perspective that may not be considered but may be helpful to the discussion. At one panel meeting and due to my research preparation, I found myself advocating for members of the military who might be prescribed a potent drug that was being reviewed. I found that one of the active ingredients was counter indicated with SSIs. Since many in the military are reported to be treated for depression with SSIs, I advocated for a consideration of this interaction on the label should the drug be approved by the FDA. I am hopeful that this kind of a consumer perspective can make a contribution to the deliberations when I raise concerns such as this.
LG: Can you tell me another instance?
DA: I served on committee for a cancer drug which had a regimen of 3 years and included some serious side effects. There was an alternative existing drug with similar side effects, effectiveness and result but with a short-term treatment. I raised a concern that the long-term treatment would be arduous on patients with only a very slight percentage of improvement in the death rate. Although we are asked at panel meetings to review safety and efficacy, I believe that quality of life issues are also an important perspective.
LG: What role does empathy play in your advocacy work?
DA: I leverage my own experiences and understanding of being challenged by a health concern, my broader experience in representing consumers and my desire to improve the quality of people’s lives when they are suffering physically and emotionally from health concerns. In the case of the cancer drug, it was clear to me that no one should suffer longer than necessary from side effects and with little improvement in the primary outcome of death survival.
LG: What achievements are you proudest of?
DA: I have served as a mentor for new Consumer and Patient Representatives and enjoy passing on tips to help with the initial orientation process. I am extremely grateful to have had the past work advocacy opportunities to author countless editorials, articles, book chapters, etc. and to give many speeches nationally and internationally at consumer and medical associations, run conferences and workshops and work on legislation about consumer health care issues.
LG: What direction do you see the FDA moving in?
DA: I am truly in awe at the number of issues that the FDA considers regarding drugs that have already been approved and by ones that are in the pipeline as well as the huge number of medical devices for which they have oversight. Since the passage of legislation (FDAAA), the FDA has been working on enhancing transparency and involving more consumers and patients in their various activities. The social media is now very important as an educational resource. Recently, it has reported on a number of drugs that had been approved by the FDA but now have serious side effects reported which weren’t able to be considered at the time of approval. Examples are a recent one for diabetes and drugs used for osteoporosis. FDA leaders want consumers to more readily report side effects to them via the MedWatch area of its Web site set up for safety information and adverse event reporting. In addition, they hold frequent meetings and Webinars on a variety of topics for patients and consumers and a number of these presentations are available through http://www.fda.gov.
LG: How do your advocacy skills work with family and friends?
DA: Most of my family and friends probably don’t realize the level of involvement I have had as a lay health consumer advocate but some do turn to me and ask for a perspective that they can add to their research and deliberations with their physician. I might suggest resources and strategies but above all provide a listening ear to their concerns and overall experience. I speak up about health care perspectives but realize that in the end everyone has to make their own choice about their personal health care decisions.
LG: What are your recommendations to people who have health conditions?
DA: Read everything; talk to others. Do the research. Seek out credible internet Websites and verify information with published medical articles. Consider joining a support group. Make informed decisions using evidence-based information not just an anecdotal experience about which you have heard. Seek medical professionals who will work in partnership with you and respect your decisions about treatment.
LG: Should everyone who experiences health problems become “activated” and help others in some way?
DA: Advocacy is a passion. You have to have a strong desire to take the time required to make someone’s experience easier and more hopeful. And, you need to come from a position of knowledge so your research and perspective are critical. In addition, you might feel activated towards advocacy at various points in your life and not at others, depending on your current experience. The hope is that education, peer-support and advocacy on behalf of others can contribute to enhancing the health care system to benefit a broad group of individuals impacted by debilitating diseases.
Stories can enhance health websites because they resonate with health information seekers, who find support and encouragement from the experiences of others like them. Two excellent examples are Weight Watchers’ Success Stories and Livestrong.org’s Survivorship Stories. Both sites include extensive libraries of well-written stories about people’s experiences losing weight and surviving cancer, respectively.
Because of the effectiveness of stories in health websites like these, I challenge my Online Consumer Health students to consider how the inclusion of stories can enhance the websites they design in class. In one assignment, they first review the purpose, length, transparency of authorship, writing style, and perceived accuracy of stories on health websites. Then they either write or reuse stories from other websites for their own sites.
In my constant search for examples to use in class, I came across the stories in RediscoverYourGo. I contacted the developer to learn about the planning and design of the website, particularly how the decision was made to use stories.
I spoke with Simon Lee, CEO of Lee-Stafford on February 8, 2010. RediscoverYourGo was developed for a medical device company, Smith & Nephew, that manufactures parts for hip and knee implants. On the home page, “stories” is one of 4 tabs on the left and 3 links to stories are featured on the lower right next to “Learn from real patients who have rediscovered what it means to live pain free.” The “stories” tab leads to a list of the replacement products headed by, “Real people who have rediscovered their go.” Each replacement product has story snippets from people who have had surgery to implant that product (example to the left). The story snippets are brief, first-person quotes and they include the name (generally the first name and last initial but in some cases the full name), city, and product, illustrated by a photograph. Rather than use a headshot, many show active poses and look like they were taken informally, not by a professional photographer (in contrast to the posed “after” pictures on Weight Watchers). There is some duplication, with some people appearing in more than one category, presumably because the person has used multiple products. The first person quotes were extracted from a letter or interview with, as Simon said, “100% real patients.”
Selecting a snippet leads to a longer story in the third person about the person’s experience with pain, learning about and contacting the surgeon, undergoing the surgery, recovering, and developing a post-surgery active lifestyle. The header includes more about the person, including occupation, a larger version of the snippet photograph, and a picture of the replacement product. Many of the stories identify the storyteller’s age, and the photographs indicate age as well. Stories are more likely to resonate with someone who identifies with the storyteller, which, in this case, might be because of replacement product, age, or recreational activity. Weight Watchers facilitates this by sorting stories by gender, age, or total weight loss and inviting a viewer to “Read about someone like you”.
The use of stories is “a toe in the water” to create an online community for patients with Smith & Nephew products. What lay behind the use of stories, Simon told me, was the desire to create a “patient ambassador network” to capitalize on patient stories. Often patients with debilitating pain became advocates for the surgeon who “fixed” their problem: they wrote letters thanking the doctors who performed their replacement surgery for giving them their life back and were eager to discuss their outcomes with others.
Simon believes the more open use of social media or forums was not possible because of concerns about monitoring, disclosures and privacy, a concern shared by all the major orthopaedic and spine device companies. Highlighting patient experiences on a website seemed the best alternative.
The overall website design goal was to modernize the brand and create more youthful and non-surgical-looking site as befitting one of the big growth areas: patients 45+. Previously, the primary target audience was 65+. The focus on the new demographic is because a growing number of younger people are seeking partial replacements. The potential exists that they will then become loyal customers to the brand and their surgeon. Simon believes that healthcare is local and that decisions to choose care are “based on who can treat me and where can I be treated.” Furthermore he believes that “educated patients are happy patients and happy patients are advocates for the doctor who ‘healed’ them.”
Every Person Has a Right to be Healthy: An Interview with Susan Harrington from the Boston Public Health Commission
Susan Harrington, the assistant director of communications at the Boston Public Health Commission, was a guest lecturer in Online Consumer Health. From infectious disease to violence prevention and nutrition, Susan promotes the work of the Commision’s 33 program areas. Using a combination of traditional and social media, like Twitter, Facebook, and YouTube, Susan designs targeted social marketing campaigns to prevent disease and protect the health of Boston’s residents. I interviewed Susan about her recent initiatives to improve Boston’s health.
Lisa Gualtieri: During your guest lecture, you talked about some of the successful initiatives to reach teenagers with health messages. Which campaign was most successful and why?
Susan Harrington: The Boston SexED campaign. We went directly to Boston teens to ask them what was important to them. They didn’t just inform the campaign; they developed the concept, actively worked to get the word out, and helped their fellow teens answer these important questions. The Facebook conversations were lively while informative. We had a great reach in terms of the number of teens that either saw the campaign or participated in it. We continue to look at the hard data to see if there is any decrease in the number of sexually transmitted infections among teens.
Lisa Gualtieri: H1N1 is obviously on many people’s minds. What are the types of information you are providing? Can you also talk about your use of twitter to provide updates on line lengths at clinics?
Susan Harrington: We are providing everything there is to know about the flu, both seasonal and H1N1. This includes how to prevent the flu, the difference between the cold and flu, what to do if you get the flu, vaccine safety, and clinic information. As much as we are trying to get this important information out, we are always listening to what questions people may have. We develop videos and information guides to address their questions. In fact, our flu prevention campaign and video, “Talkin’ ‘bout the Flu”, is being replicated in other cities and counties nationwide for its innovative approach to the topic. In addition to traditional marketing, we used Facebook and Twitter to relay our message, garnering attention across the globe. Speaking of which, the Boston Public Health Commission is hosting a number of H1N1 flu clinics throughout the winter. We have used Twitter and Facebook to provide updates, including what people should bring, line lengths, etc. People responded back to us saying they checked online before they walked out the door, or even on their phone, so they were fully informed when they got to the clinic. They helped to retweet our posts and even posted some of their own. We love all of our Twitter followers and Facebook fans.
Lisa Gualtieri: What are the most common languages used in Boston? Why did you decide to use a translation program instead of providing translations of key information?
Susan Harrington: Boston is incredibly diverse. In addition to English, the top five spoken languages in no particular order are Spanish, Vietnamese, Chinese (Mandarin/Cantonese), Haitian Creole, and Portuguese. All of our materials go through a rigorous translation process. First, if there are funds available, any document is translated by a native speaker at a translation company. The document is then reviewed and edited by a native speaker on-staff for accuracy. (If there are no funds, then the native speaker on-staff completes the translation and is a reviewed by a second native speaker.) We tried to provide the same quality of translation at one time for our website. However, because the website changes daily, it is difficult to update the translated versions at the same fast rate. Also, we wanted to provide a larger range of languages, such as Albanian and Russian. We reviewed multiple online translation mechanisms and our on-staff translators were a key component in this process. Machine translation is never 100% accurate, but we hope to provide some translated content. However, our key information, such as fact sheets, brochures, etc., are all translated by humans. We don’t want to lose anything in translation and lose the trust of the residents we are trying to serve and protect.
Lisa Gualtieri: Have you gotten feedback on the translation services?
Susan Harrington: For the most part, the human translation is accurate and easy-to-understand. But, just as any two English speakers may use different expressions, so too with non-English speakers. For example, a Spanish-speaker from Puerto Rico may have different expressions than someone from Guatemala. We aim to use the language and expressions most common in Boston, but there are always differences.
Lisa Gualtieri: With no budget constraints, what would you do next?
Susan Harrington: Wow, what a question. In my role in communications, I have loved bringing attention to important issues, starting the difficult conversations, and hopefully improving the lives and health of my fellow Bostonians. If money were no object, I would expand the number of marketing campaigns to focus on overlooked projects and extend the great campaigns that we have had. Often times though, it’s more than about money. It’s about getting everyone involved in an issue because, even though they may not think it, they can make a difference. Every community, every person, has a right to be healthy.
When I told Avi, an editor in Dallas, about my health research, he responded, “It’s coincidental that I had an Internet health moment this week.” Avi had switched to a generic SSRI anti-depressant from a name-brand and was feeling poorly.
The Web sites Avi used were the FDA, a mental-health news clearinghouse/portal, and, a respected online forum for patients using anti-depressants. He went on to say that this “online research showed a high probability that the nasty symptoms I’ve experienced the last couple of weeks are due to my switching from a name-brand drug to a generic version.”
Avi continued, “With the Web information in hand, I talked to my doc and the pharmacist, went back to my old med, and, today, I’m feeling much, much better. Did I need the Web for this? Not necessarily; a phone call to my doc may have done the same thing. What the Web did was immediately confirm the strong probability between the generic med and my symptoms, which allowed me to start the chain of events necessary to fix the problem.”
I asked Avi why he turned to the Web first. He said, “It’s a convenient, fast filter/information source, and I trust my Web-research skills. Moreover, I didn’t stop after doing my surfing; it was just a first pass at the information available before I called my doc, to whom I didn’t say, ‘Hey, all these blokes out on the Web are going through hell with this generic, get me off of this stuff!’ Rather, I first had a discussion with my pharmacist to find out if she had had similar feedback from her patients on the same drug. Then, with information from three serious, medically respected Web sites and my pharmacist’s comments in hand, I called my doc and simply asked him if there could be a causal link between my switch to the generic and my symptoms. If he had said no, I would have cited the evidence I had in hand that appeared to suggest a link. But, he didn’t, so I didn’t have to go beyond the initial question.”
Avi concluded, “So, there’s my story. Not very dramatic.” But it exemplifies both the empowered healthcare consumer who trusted his information literacy skills, and also the lack of disclosure about the use of the Internet that so frequently occurs between patients and doctors. (A.G., private correspondence, 8/5/08 and 8/6/08).
I wrote the cover story of Tufts Medicine, Winter 2009, with Dr. Janey Pratt, a surgeon at Mass. General Hospital. The article looks at patient use of the Internet from the physician perspective. The article concludes:
Online resources can help your patients become better educated about medical topics, more confident and comfortable with you and more compliant with treatment. As Anthony Schlaff, director of the M.P.H. program at [Tufts University School of Medicine], notes, “At its best, the Internet is one more tool in the partnership between a physician and patient.” [Bruce] Auerbach, the Massachusetts Medical Society president, couldn’t agree more. “Given that patients are going online,” he says, “the best thing to do is engage them as partners in care.”
The full article can be read at Dr. Google: Your Patients, the Internet, and You.