Posts tagged ‘online health communities’

A Website for the Management of Narcolepsy

Students in Online Consumer Health at Tufts University School of Medicine design health websites for a topic of interest to them or redesign websites for real organizations. Ellen Langhans, a graduate student at Emerson College working toward a master’s degree in Health Communication, chose the management of narcolepsy for her topic. Her goal was “to create a site for people who live with narcolepsy – both patients and their loved ones alike – to help them manage the disorder,” to provide timely information, and to help site members learn from and connect with each other to thrive. Her final paper details the process she went through, which included the development of four personas and a competitive analysis of four websites: two for narcolepsy, Narcolepsy Network and The Stanford Center for Narcolepsy, and two for diabetes management that had similar goals, Diabetes.com and Take Action. Ellen and I welcome your feedback on her excellent and comprehensive paper.

December 28, 2010 at 11:19 pm 1 comment

A Consumer Representative to the FDA on Advocacy

Diane Aronson is a Special Government Employee, serving as Consumer and Patient Representatives for the Food and Drug Administration (FDA). Working through its Center for Drug Evaluation and Research (CDER), Diane has served on many of its Advisory Committees and has been a standing member of the Arthritis Advisory Committee. She is Past Executive Director of RESOLVE, the National Infertility Association, Past-President of the International Federation of Infertility Patient Associations and the Road Back Foundation, an on-line service that provides education, medical articles and peer-support about the use of antibiotics for the treatment of rheumatic diseases.  Diane has also served as a Consumer Representative for the Centers for Disease Control and Information (CDC) and the National Institutes of Health (NIH).

LG: How did you become a health consumer advocate?

DA: I noticed at a young age that I can be compelled to speak up for others when needed and that this ability can lead to making a difference.  My style is to listen carefully and provide support and information, especially where issues of safety or risk are concerned.  The path to my health consumer advocacy work started as a result of my own medical issues with arthritis, cancer, and infertility. My rheumatoid arthritis wasn’t diagnosed for years after symptoms started in my late teens.  The pain and fatigue were discounted by my physician who told me that I looked fine despite some irregular lab results and took no further action to explore what caused the symptoms.  What activated me included the consequences of this approach and a desire to help others who struggle to find successful medical treatment. This perspective encouraged me to volunteer to share my experiences and later, led to paid consumer advocacy work and to my current position with the FDA.  Despite past complex and challenging health issues, I am grateful to be healthy and very active.

LG: How did you start working at the FDA?

DA: I learned that the FDA was seeking a Consumer Representative for their Arthritis Advisory Committee and so I applied.  They are often looking for individuals who can provide a consumer perspective to their advisory deliberations as well as an interest in and ability to assess medical data. The application process is about six months long as it includes a review for any potential conflicts of interest.

LG: Tell me about what you do at the FDA.

DA: I am asked to serve on Advisory Committees to review drugs that may need an additional review of outside experts.  Committee Panels most often include physicians, researchers, statisticians, patients, consumers and non-voting industry representatives.  For each meeting, panel members are sent information from the company-sponsor as well as the FDA about the drug to be reviewed.  A list of questions is also sent to panel members who are encouraged at the meetings to ask questions and, at the end, to vote on and provide opinion about the drug under review.  For me, the position requires the combination of the advocate in me, an interest in science and biology, my past medical experiences, the desire to represent a broad constituency of health care consumers and a general interest to review details and solve problems. It is very gratifying through my research and study before meetings, and especially as a layperson, to be able to contribute a perspective that may not be considered but may be helpful to the discussion. At one panel meeting and due to my research preparation, I found myself advocating for members of the military who might be prescribed a potent drug that was being reviewed.  I found that one of the active ingredients was counter indicated with SSIs. Since many in the military are reported to be treated for depression with SSIs, I advocated for a consideration of this interaction on the label should the drug be approved by the FDA.  I am hopeful that this kind of a consumer perspective can make a contribution to the deliberations when I raise concerns such as this.

LG: Can you tell me another instance?

DA: I served on committee for a cancer drug which had a regimen of 3 years and included some serious side effects.  There was an alternative existing drug with similar side effects, effectiveness and result but with a short-term treatment.  I raised a concern that the long-term treatment would be arduous on patients with only a very slight percentage of improvement in the death rate.  Although we are asked at panel meetings to review safety and efficacy, I believe that quality of life issues are also an important perspective.

LG: What role does empathy play in your advocacy work?

DA: I leverage my own experiences and understanding of being challenged by a health concern, my broader experience in representing consumers and my desire to improve the quality of people’s lives when they are suffering physically and emotionally from health concerns. In the case of the cancer drug, it was clear to me that no one should suffer longer than necessary from side effects and with little improvement in the primary outcome of death survival.

LG: What achievements are you proudest of?

DA: I have served as a mentor for new Consumer and Patient Representatives and enjoy passing on tips to help with the initial orientation process.   I am extremely grateful to have had the past work advocacy opportunities to author countless editorials, articles, book chapters, etc. and to give many speeches nationally and internationally at consumer and medical associations, run conferences and workshops and work on legislation about consumer health care issues.

LG: What direction do you see the FDA moving in?

DA: I am truly in awe at the number of issues that the FDA considers regarding drugs that have already been approved and by ones that are in the pipeline as well as the huge number of medical devices for which they have oversight.  Since the passage of legislation (FDAAA), the FDA has been working on enhancing transparency and involving more consumers and patients in their various activities. The social media is now very important as an educational resource.  Recently, it has reported on a number of drugs that had been approved by the FDA but now have serious side effects reported which weren’t able to be considered at the time of approval.  Examples are a recent one for diabetes and drugs used for osteoporosis.  FDA leaders want consumers to more readily report side effects to them via the MedWatch area of its Web site set up for safety information and adverse event reporting.   In addition, they hold frequent meetings and Webinars on a variety of topics for patients and consumers and a number of these presentations are available through http://www.fda.gov.

LG: How do your advocacy skills work with family and friends?

DA: Most of my family and friends probably don’t realize the level of involvement I have had as a lay health consumer advocate but some do turn to me and ask for a perspective that they can add to their research and deliberations with their physician.  I might suggest resources and strategies but above all provide a listening ear to their concerns and overall experience. I speak up about health care perspectives but realize that in the end everyone has to make their own choice about their personal health care decisions.

LG: What are your recommendations to people who have health conditions?

DA: Read everything; talk to others.  Do the research.  Seek out credible internet Websites and verify information with published medical articles. Consider joining a support group.  Make informed decisions using evidence-based information not just an anecdotal experience about which you have heard.  Seek medical professionals who will work in partnership with you and respect your decisions about treatment.

LG: Should everyone who experiences health problems become “activated” and help others in some way?

DA: Advocacy is a passion.  You have to have a strong desire to take the time required to make someone’s experience easier and more hopeful.  And, you need to come from a position of knowledge so your research and perspective are critical.  In addition, you might feel activated towards advocacy at various points in your life and not at others, depending on your current experience.  The hope is that education, peer-support and advocacy on behalf of others can contribute to enhancing the health care system to benefit a broad group of individuals impacted by debilitating diseases.

October 26, 2010 at 11:48 pm 2 comments

Stories that Enhance Health Website Design: If It Helped Them It Might Help Me Too

Stories can enhance health websites because they resonate with health information seekers, who find support and encouragement from the experiences of others like them. Two excellent examples are Weight WatchersSuccess Stories and Livestrong.org’s Survivorship Stories. Both sites include extensive libraries of well-written stories about people’s experiences losing weight and surviving cancer, respectively.

Because of the effectiveness of stories in health websites like these, I challenge my Online Consumer Health students to consider how the inclusion of stories can enhance the websites they design in class. In one assignment, they first review the purpose, length, transparency of authorship, writing style, and perceived accuracy of stories on health websites. Then they either write or reuse stories from other websites for their own sites.

In my constant search for examples to use in class, I came across the stories in RediscoverYourGo. I contacted the developer to learn about the planning and design of the website, particularly how the decision was made to use stories.

“I can do anything I want, now. I would say I’m ‘back to normal,’ but I didn’t know ‘normal’ for years. I would say I gained back 15 years or so. It’s really, really good.”

I spoke with Simon Lee, CEO of Lee-Stafford on February 8, 2010. RediscoverYourGo was developed for a medical device company, Smith & Nephew, that manufactures parts for hip and knee implants. On the home page, “stories” is one of 4 tabs on the left and 3 links to stories are featured on the lower right next to “Learn from real patients who have rediscovered what it means to live pain free.” The “stories” tab leads to a list of the replacement products headed by, “Real people who have rediscovered their go.” Each replacement product has story snippets from people who have had surgery to implant that product (example to the left). The story snippets are brief, first-person quotes and they include the name (generally the first name and last initial but in some cases the full name), city, and product, illustrated by a photograph. Rather than use a headshot, many show active poses and look like they were taken informally, not by a professional photographer (in contrast to the posed “after” pictures on Weight Watchers). There is some duplication, with some people appearing in more than one category, presumably because the person has used multiple products. The first person quotes were extracted from a letter or interview with, as Simon said, “100% real patients.”

Selecting a snippet leads to a longer story in the third person about the person’s experience with pain, learning about and contacting the surgeon, undergoing the surgery, recovering, and developing a post-surgery active lifestyle. The header includes more about the person, including occupation, a larger version of the snippet photograph, and a picture of the replacement product. Many of the stories identify the storyteller’s age, and the photographs indicate age as well. Stories are more likely to resonate with someone who identifies with the storyteller, which, in this case, might be because of replacement product, age, or recreational activity. Weight Watchers facilitates this by sorting stories by gender, age, or total weight loss and inviting a viewer to “Read about someone like you”.

The use of stories is “a toe in the water” to create an online community for patients with Smith & Nephew products. What lay behind the use of stories, Simon told me, was the desire to create a “patient ambassador network” to capitalize on patient stories. Often patients with debilitating pain became advocates for the surgeon who “fixed” their problem: they wrote letters thanking the doctors who performed their replacement surgery for giving them their life back and were eager to discuss their outcomes with others.

Simon believes the more open use of social media or forums was not possible because of concerns about monitoring, disclosures and privacy, a concern shared by all the major orthopaedic and spine device companies. Highlighting patient experiences on a website seemed the best alternative.

The overall website design goal was to modernize the brand and create more youthful and non-surgical-looking site as befitting one of the big growth areas: patients 45+. Previously, the primary target audience was 65+. The focus on the new demographic is because a growing number of younger people are seeking partial replacements. The potential exists that they will then become loyal customers to the brand and their surgeon. Simon believes that healthcare is local and that decisions to choose care are “based on who can treat me and where can I be treated.” Furthermore he believes that “educated patients are happy patients and happy patients are advocates for the doctor who ‘healed’ them.”

February 14, 2010 at 1:01 am 12 comments

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.

January 14, 2010 at 4:37 am 5 comments

Health Stories: Asking the Doctor a Question Armed with the Answer

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).

June 28, 2009 at 10:57 pm 2 comments

Finding Useful H1N1 Information Online

I was interviewed for Healthcare IT News about how H1N1 information is disseminated to the public. While the news media was providing constant updates about outbreaks, my interest was in how healthcare consumers get useful information. I sent the author, Molly Merrill, a quick analysis of some of the sources of information I had used.

The CDC is known and established as the most respected source of information in this country and comes up as one of the first results in most searches on “swine flu” or “H1N1”. Their site is well-branded and is clearly marked with the last updates. However the site itself is busy with sidebars and lots of related information, while arguably the most important information for most healthcare consumers is in a box near the bottom, “What You Can Do to Stay Healthy”. What is likely to be prevalent on most people’s minds doesn’t appear at all here. If you click on “H1N1 Flu & You” near the bottom, a Q&A format addresses the questions people are likely to have, such as “What are the signs and symptoms of this virus in people?” In addition, the CDC has done a great job of using social media, such as twitter, for updates.
 
While I applaud the Massachusetts Department of Public Healthfor providing material in 14 languages, the page itself is basically a collection of links to PDFs. The documents I read are are well-written but some are not even what the links say; for instance, under “Resources if You Are Sick or Think You Are Sick”, the Flu Symptoms Checklist was designed for a parent to determine if a child should be kept home from school or brought to the doctor.
 
WebMD’s Swine Flu Centerdoes a better job of providing immediately visible and useful information through clearly labeled links to answer common questions such as “Swine Flu and Travel”. Due to poor health literacy skills and the fears that have been played upon by the media frenzy, health Web sites should provide very specific information that addresses the concerns uppermost on a healthcare consumer’s mind and it should take minimal scrolling to find it, as is the case here. 
 
Finally, my town, Lexington, MA, has done a great job of addressing parental concerns through emails. The school department Web site provides a parent resource with guidelines about how to talk to your child, a huge problem when children hear a lot on the media and from their friends and need to hear factual age-appropriate information from their parents. And, when one of my sons was out sick for a few days, I received a phone call from the school nurse!

June 9, 2009 at 9:43 pm 4 comments

What Your Patients Are Doing Online and Why You Should Engage Them as Partners in Care

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.

February 26, 2009 at 7:30 am 2 comments

The Doctor as the Second Opinion and the Internet as the First

In “The Doctor as the Second Opinion and the Internet as the First,” I describe the increasing common phenomenon of people using the Internet before seeing their doctor:

People who use the Internet for health information often obtain their first opinion that way, and then, if they go to a doctor, the doctor’s advice is relegated to the second opinion. Using the Internet, or Dr. Google, as a first opinion can be problematic due to misinformation, misinterpretation of valid information, and the fears that can arise due to lack of medical knowledge, inexperience, and limited perspectives. When patients do visit their doctor for a second opinion, some do not disclose the fact they already received their first opinion and often their doctors do not ask. The result is that patients may suffer needlessly if their fears, concerns, misunderstandings, and misinterpretations are not addressed by the healthcare providers with the expertise and skills to assist them. A pernicious disconnect exists between many patients who use the Internet for health information and the medical professionals who care for them. The medical profession can alleviate this disconnect by taking the lead in establishing guidelines for systematically talking to patients about, and guiding, their Internet research. Human-computer interaction professionals can collaborate with the medical community in ensuring credible health Web sites become the gold standard that patients use to achieve better health.

I appreciate any feedback, insights, or experiences.

February 16, 2009 at 1:27 am 15 comments

Cereal and the Internet or Can’t I Eat My Breakfast without Going Online?

CB065151The four breakfast cereal boxes sitting on my kitchen counter all have urls to promote healthy eating. Not having noticed that before, I checked if all food packing has urls now, and discovered that many do, but they are primarily, in my small sampling, to enter contests, get recipes, or go to the corporate website. While some of the cereal packages similarly have urls for recipes and the like as well, what I was interested in was the healthy eating information.

Starting with my personal favorite, the Quaker Oats oatmeal package told me that it is one of the “over 250 smart choices made easy from Pepsi Co.” at smartspot.com. There I learned about “energy balance”, why eating breakfast is healthy, and found a link to The Breakfast Research Institute, which is sponsored by Quaker and Tropicana. There, the Breakfast Calculator told me that my breakfast of choice, while higher in calories than a doughnut and cup of coffee, is also significantly more nutritious and brings me closer to meeting my daily recommended nutrition requirements. I could compare my breakfast to their pre-set breakfasts and even tweak mine to increase the nutritional value. And, for my breakfast entertainment, there were podcasts!

After that, I barely wanted to check the other sites out but did out of curiosity. Corn Chex had wholegrainnation.com, where I took a multiple choice quiz about whole grains. Honey Nut Cheerios offered eatbetteramerica.com (which wholegrainnation.com is part of), where I found lots of recipes, a discussion forum, a blog, and more. The blog entries I read all linked to “healthified” recipes in which some ingredients are replaced with alternatives so the result is “as yummy” but “better-for-you”. Finally, Raisin Bran has kelloggsnutrition.com, where “master-moms” taught me how to “snacktivate”.

If I was creating a website that a cereal box led to, based on my perusal of these sites, I would:

  • think of common misspellings for my url and buy the domains – typing in kelloggnutrition.com with one “g”, as I first did, should still lead to the right website
  • make sure that my discussion forums were not stale (no pun intended) – topics from over a month ago would not be tagged as new
  • determine if there is a pedagogical or branding advantage to coining my own terms, such as “healthified” and “snacktivate”
  • use the simplicity of cereal – it is generally eaten for breakfast in a bowl with milk – as a guiding principle rather than developing a complex or overwhelming site
  • most of all, I would promote healthy eating for breakfast through advice that could be immediately used

The sites I looked at collectively offered advice on all aspects of diet and fitness, not just breakfast, through articles, tests, tools, forums, podcasts, and ask the expert, oriented primarily to parents but with sections for professionals, educators, and children. But what is the likelihood that someone will peruse this abundance of  information and implement significant lifestyle changes before rushing off to school or work?

Ultimately, I preferred the Breakfast Research Institute. It just focused on breakfast. It was the only site that provided me with immediately useful and actionable advice: that adding a piece of fruit to my current breakfast of oatmeal would give me a healthier start to my day. And it confirmed what I already knew, although affirmation is always beneficial: that my current breakfast is far superior nutritionally to coffee and a doughnut.

January 11, 2009 at 11:44 pm 1 comment

How Much Chocolate Should Anyone Eat and How Much Should Anyone Rely on Health Forum Advice

I love chocolate but have never considered that the amount I eat is unhealthy. In fact, how common is it to eat chocolate – or any other food – to the point of being worried? In the case of white_sakura (someone’s user id), she (I believe the people posting here are female) said in a forum, “I was wondering if it is too much to have about 30% of my calorie allowance to go toward chocolate.” The forum, part of calorie-count, from About.com Health, is a site for people who are concerned about weight loss and nutrition.

In response to her post, w_s, as someone nicknamed her, received 6 responses in 2 days and also provided clarification a few times. It was quite a lively discussion compared to some forums, where questions go permanently unanswered. In the ensuing discussion, one person told w_s what seemed like practical advice to me: “30% would be too much. Chocolate, although lovely, is just sugar and fat… the real downside is that you’d be trying to get all your nutrition from the remaining 70% of your diet.” Another agreed, “30% is waayyyy too high.” Someone else differed in her view, “If it fits in your cals and you feel good, go for it!”

Other advice was to try savoring her chocolate – which w_s was already doing, taking an hour to eat 2 squares. Wow, she must not have a busy schedule. I suppose you could savor the taste of chocolate for hours as long as you don’t work in a call center where you have to answer the phone and talk to people. Or any other occupation where you have to talk to people. Or touch anything. That doesn’t leave many jobs.

A side discussion had to do with the reported health benefits of dark chocolate, including a link to an article in WebMD, which reports on a study and concludes that a balanced diet and exercise is the key to a healthy heart. The same person wrote about her own daily chocolate consumption, which “keeps me from overindulging in some other not-so-good-for-me things”. Did she mean licorice, Pringles, or more serious vices?

Many people are more comfortable seeking peer advice online, often more open anonymously than they would be with their doctor – or a close friend. (Actually, that made me wonder if w_s has a spouse or roommate, and, if so, does she eat in front of him or her?) It’s also heartwarming that people respond, and most empathically. No one called w_s obsessive or addicted or recommended that she take a leap into Willy Wonka’s river of chocolate. However, only two responses seemed medically sound, those saying that 30% is too high. No one suggested making an appointment with a doctor or nutritionist or following a plan for a nutritionally-balanced diet.

There was only one mention of a specific product in a response, a type of Lindt chocolate. After reading that I noticed that the banner ad was for car insurance and the sidebar ad was for flights to London – now Switzerland I could understand! More relevant to the discussion topic, the banner at the bottom was a meter for diabetics. That ad crystallized the issue for me: poor nutrition can have severe consequences. My advice to w_s: getting anonymous online advice is great but this is a case where professional medical advice could add healthy years to your life.

August 19, 2008 at 1:26 pm 12 comments

Ten Things You Can Do in Ten Minutes To Be a More Connected Health Professional

You need a break and, instead of heading to the coffee pot, take 10 minutes to follow one of these 10 suggestions to be more connected and better at communicating health messages:

  1. Become a social networker: Take your pick, LinkedIn, Facebook, Plaxo, … Create a profile, including a picture, and invite some colleagues. If you search, you’ll find many of them already there. (You can connect to me!)
  2. Try twitter: Join twitter and try out micro-blogging. Invite some colleagues or find some who are already there. Try following me (I am a sporadic user but I post health links occasionally) or try BBC Health.
  3. Read a blog: Health blogs range from very professional and constantly updated to navel-gazing ones that were last posted in over a year ago. I recommend you start with Well, Tara Parker-Pope’s health blog at the New York Times, The Wall Street Journal’s Health Blog, Consumer Report’s Health Blog, or Health 2.0. For contrast, try Leroy Sievers’ NPR blog or one of WebMD’s blogs. Not feeling overwhelmed yet? Do a search on “health blogs” or even “health blog directories” and I guarantee you will be suffering from information overload. Now comment on a blog. Not only do bloggers like to know you read a post, but you undoubtedly have something to contribute. After all, if you wrote a blog post, wouldn’t you like to know what your readers think? Be a producer, not just a consumer!
  4. Create a blog: You knew this was coming! But only do it if you can commit to posting regularly. If you think you can only post sporadically, start one with a few colleagues. I recommend wordpress but there are many other blogging tools.
  5. Create a community: try ning and set up an online community about your health specialty. First search to see what else is there. If you find some, check to see how many members they have and the date of the latest site activity.
  6. Do a search on a health topic: Select a topic of interest to you professionally and do a search. Look at the number of results first. Next look to see if there are sponsored links. Finally, look at the first 10 results and see if you think they represent your topic well. If your work isn’t there, come up with a plan for greater visibility. (If you don’t know what SEO stands for, then at least become conversant with it.)
  7. Learn how information spreads: Post an article you like (or wrote) to digg, mixx, StumbleUpon, or reddit. Or post a picture to Flickr or a video to YouTube. If you aren’t ready to post, then participate by commenting on or voting on it.
  8. Use Wikipedia: Have you read Wikipedia’s entry on your health specialty? Read it and enhance it. If there isn’t one there, create it. There are other wikis out there too – for instance, you might want to add your name to the list of Health 2.0 people – and see who else is on it.
  9. Connect with a person: Email a colleague about something you read or are thinking about. Or pick up the phone. Or even invite someone you’ve been meaning to talk to out for coffee. (See, you get your coffee break after all.)
  10. Just for fun: What would it take for you to be the first health specialist on TechCult’s Top 100 Web Celebrities list – besides a blog (see #4) and funky hair?

Finally, think of your own idea for a 10 minute activity that can improve your health communication skills and post it as a comment below so others can benefit.

Thanks to the students in Emerson College’s Summer Institute for Social Marketing and Health Communication who inspired this post following my lecture on New Technologies for Health Communication.

July 20, 2008 at 4:14 am 4 comments

Optimal Use of a Scale for Weight Loss

I perused a weight loss site, The DailyPlate, curious how they support people who are trying to lose weight. The site’s raison d’être seems to be tracking of calories consumed and burned. I checked out swing dancing, my favorite activity, only to find that of the seemingly countless types of dancing, swing burns 296 calories an hour for an average 145-pound person, over twice what accordion-playing burns. On the advertiser-supported site, Lance Armstrong lets me know what to do if I’m “tired of being tired”.

Since I found the effort of calculating calories burnt overwhelming with so many choices – how many calories did I burn searching for my activities? – I looked at the forums. I came across the very practical question of when is the best time of day to weigh oneself. It’s a fascinating question because it is so practical yet complex, as evidenced by the varied responses which depicted the emotional impact of weight loss or gain. The posts contained humor, mostly about doctors, euphemisms, and advice from personal experience or from the writer’s doctor or nutritionist.

ScaleI liked how supportive people were, in much the same way I’ve seen in other health forums. The responses showed the incredible range of opinions on how to use a scale as part of weight loss and, futhermore, the extent to which devices come with instructions for set up and maintenance but not for use. My scale is the most complex one I’ve ever owned, and, while I can change the battery, I do not avail myself of all of its features (feature creep is a growing problem in previously simple devices, including the toothbrush and the scale). But, like my lesson in videoconferencing, where I learned how to connect sites around the world without any advice about how to engage students, sometimes devices need instructions for optimal use. Should the AMA weigh in?

June 21, 2008 at 1:09 am 10 comments

What Do “New York on $5 a Day” and “Mathematics Made Easy” Have in Common?

The Boston Globe reports that 2 adults sharing a hotel room and eating 3 meals spend, on average, $606 a day in New York City. I go there often for business and have no trouble believing this. There was a book, published in 1964, called New York on $5 a Day. My interest is not inflation or travel costs, but book titles: what a compelling title! And much better than New York on $606 a Day. A search for “New York” books brings up Not for Tourists 2008 Guide to New York City and The Best Things to Do in New York City: 1001 Ideas. Not for tourists – but I am a tourist! – and if this is an insider’s guide then do natives read it? 2008 in the title reminds me that I need the new edition, and, if anything like car models, 2009 will be available well before 2008 ends. 1001 ideas makes me hyperventilate – a few good ones are all I need.

When I was in high school, a friend gave me Mathematics Made Easy, which was one of the most inspirational books I ever read. I saw this book recently in a church bazaar, and thought about the title, which refers to the topic, not the reader. Now the For Dummies series offers numerous math books, as does The Complete Idiot’s Guide. I ended up a math major in college: could Math for Dummies have similarly inspired me? The titles of these new books refer to the reader, not to the topic.

In this age of Oprah’s Book Club determining what sells, I wish we could return to book titles that neither insult nor overwhelm the reader. But then what about course titles? I teach a course, “Online Consumer Health”, previously “Online Health Communities”. My primary motivation for changing the name was that one of my students last fall told me he signed up for the course not knowing what an online health community was.

What if course titles tried to grab you, like book titles, but still remained descriptive? I could rename mine “Online Consumer Health: How to Design and Evaluate Health Web Sites” or “How People without Medical Training Use the Internet for Health Education and Support”. One of my favorite courses in graduate school, “Software Engineering”, could be renamed “Software Engineering: How to be a Systems Architect and Play Office Politics to your Advantage”. Maybe these are a little wordy, but they are certainly descriptive and attention-grabbing.

Online courses, of course, have the same problem but more so, since there may be less context when a student isn’t on campus. A perusal of online course titles showed that titles like “Business Writing 101” are still in vogue. How about renaming it “Business Writing for Clarity and Managerial Praise”? I will say that I have seen a few online courses with intriguing names: Trump University has courses called “The Trump Way to Wealth” and “How to Start a Business on a Shoestring Budget”. These are certainly compelling and descriptive names and also briefer than my examples above.

May 21, 2008 at 1:22 am 7 comments

Atypical Patients Fall Through the Cracks

As hard as it is to be sick, it is harder when you are an atypical patient. An atypical patient is someone who has a disease and does not come from the population of people who typically get that disease. An example is the former US Senator from Massachusetts, Edward Brooke, who, in 2003, “was diagnosed with breast cancer and worked to raise awareness that the disease also affects men.” (This was just in the news because Barbara Walters revealed on “The Oprah Winfrey Show” that they were more than just friends.) Other examples are young women with heart disease and teenage boys with anorexia.

Atypical Patients Struggle to Find Information and Support Online

When someone is concerned about a disease, the internet is an easy place to turn for information and support. In fact, 80% of people in the US who use the Internet search for health information for themselves or a loved one.

Online information and support are generally targeted to the typical patient. While many people don’t know what to search for or what to call a disease, these difficulties are compounded for an atypical patient whose search results may not be relevant. A friend of mine asked me to help her find an online health community for a friend diagnosed with apraxia. Most of the sites I found supported the needs of parents whose children have apraxia. Finally, I asked a speech therapist, who suggested looking at stroke sites, since apraxia in adults often results from a stroke. Even with a diagnosis, it was hard to find relevant information and support.

One of my students last fall, Samantha Moland, designed an online health community for young women with osteoporosis and osteopenia, diseases that typically strike older women. Samantha believed that a young woman concerned about her bone density or diagnosed with osteoporosis needs information targeted to, support from, and a site designed for people her age.

Patients – and Doctors – Are Less Likely to Know Risks and Symptoms

People are notoriously bad about following medical advice about self-exams and healthy behaviors. When the warning signs of a disease are publicized, it is only the symptoms experienced by typical patients and, furthermore, the publicity is targeted to that population.

Atypical patients are less likely to know that they are at risk or how to detect a disease; thus men rarely perform breast self-exams. Sen. Brooke ignored early warning signs and “assumed the discomfort was simply his aging body’s way of slowing him down.” When his wife noticed a lump, he mentioned it to his doctor and ended up having a double mastectomy. Because of his own experience, he has worked to encourage doctors to perform breast exams on men and to encourage men to perform self-exams. Furthermore the symptoms of some diseases can be different in an atypical population, such as those of a woman experiencing a heart attack.

It is not just patients who lack awareness of risks and symptoms, but doctors as well. Furthermore, treatment for an atypical population can be more difficult since medications are less likely to have been tested on this population.

The Stigma of Disease Is Greater

Finally, an atypical patient may feel more of a stigma, or perceived stigma. Sen. Brooke, a private man, had trouble disclosing the disease even to his children initially. When an atypical patient discloses a diagnosis, the reaction is likely to be shock or disbelief, thus perpetuating the silence about these diseases.

Health Sites Need to Meet the Needs of Atypical Patients

Most health sites are designed for the populations who typically get that disease. It is important to design for these atypical patients as well in order to better meet their needs and to increase general awareness. In some cases, targeted sites are necessary since the information and support needs, diagnosis, and treatment of an atypical patient are so different from those of the populations more commonly afflicted.

Advancing from Atypical to Typical – The Name of a Disease and the Name of this Category of Disease

If a disease starts to become more common in a specific demographic, it gets its own name as well as greater recognition, such as early-onset Alzheimer’s disease. Although the symptoms are similar to Alzheimer’s disease in older patients, the patient’s age may impact both treatment and family support needs. Male menopause is a very different type of example, since it refers more to a collection of symptoms than a disease.

I thought there might be a term for diseases that strike an atypical population. Every term I tried had a different meaning, such as outlier or differential. Is there an accurate description in medical or lay terminology for this category of diseases?

May 5, 2008 at 1:30 am 2 comments

How Social Networking Dilutes the Definition of Friendship

It’s my birthday today and, for the first time, I received more birthday wishes from businesses and associates than I did from friends. Bette Midler sang, “You got to have friends,” and I have many friends who kindly remembered my birthday. But when site registration includes a date of birth, birthday messages with15% off coupons can result. (If I receive a 25% off coupon, does that mean we have a stronger relationship?)

MCI’s widely advertised Friends & Family calling program in the early 90’s introduced me to the commodification of friendship. This loyalty program provided “a lower rate for calls made to customers that they had included in their calling circle,” and, furthermore, increased switching cost since a departing customer’s former calling circle had to pay more for calls to that person. This program ended when a flat-rate plan was introduced, allowing people to call their friends without having to designate people as members of their circle.

Marilyn Monroe sang, “Diamonds are a girl’s best friend,” and obviously friendship has varied meanings. Social networking is stretching the definition of friendship even further as sites use different terminology to describe the people one is connected to. LinkedIn asks me to “Add friends or colleagues to your network?” “Friend” appears 29 times on my Facebook profile – and some of my Facebook “friends” are not people I even know well. In contrast, I really like it that twitter calls the people I follow “people”!

I believe that this overuse of “friend” can dilute the word’s meaning. Dionne Warwick’s “That’s what friends are for” is the title of a RevolutionHealth post about how “Good friends hold you together when you are falling apart, even if it’s over the silliest, most minute things.” A friend is “a person attached to another by feelings of affection or personal regard,” while social networking contacts are acquaintances or – perhaps a better word – associates: “a person united with another or others in an act, enterprise, or business; a partner or colleague“.

Studies show that people with close confidants have healthier immune systems, stronger hearts, and less depression and anxiety — not to mention more fun.” While people certainly form tight bonds in online health communities with others who are in a similar situation, I imagine these studies more likely refer to friends in the traditional sense. A study by Dr. Will Reader at Sheffield Hallam University found that most people “have, on average, five really close friends,” whether or not they use social networking sites. (I wonder how many people think that their stature is increased by the number of connections they have in a social networking site.)

It is not surprising that I was happier with the phone calls and cards from my friends, rather than those from businesses and my social networking associates. And what about that e-card from my dentist’s office – it’s hard to get a warm, fuzzy feeling. I can certainly think of more perfect ways to celebrate – in fact, already have! – than “A perfect way to celebrate: 25% off the regular price of…” And, if you are my friend, please come join us!

April 30, 2008 at 12:57 am 3 comments

The Disconnect Between Patients and Doctors

In yesterday’s talk, Patient, Heal Thyself: How to Succeed with Online Consumer Health Sites, I started off by asking if I should lose 10 lbs. on the Atkins diet or by joining Weight Watchers. Melanie Zibit answered that I would lose the weight more slowly with Weight Watchers but would be more likely to keep it off. Most people agreed that this was good advice (the wisdom of crowds). I then asked if knowing anything about the weight loss experience or medical credentials of the advice-giver would have an impact, which people agreed with. Using sites like Amazon.com, a book-purchasing decision can be made based on the wisdom of crowds (ranking and ratings), expert opinions (from professional reviewers or well-known people in the field), or other readers (whose reviews are themselves rated). But a poor book choice has few ramifications, while health decisions can have severe consequences.

Many people get weight loss or any other type of health advice from strangers or friends, often knowing little about their experience or credentials; from books or magazines (every celebrity seems to have a weight loss secret or problem, based on a perusal at the supermarket check-out); from ads in magazines or television; or even from spam (I get frequent offer for weight loss drugs without a doctor’s prescription). People also learn about weight loss online – 49% of U.S. internet users search for diet or nutrition advice and 80% search for health advice. A search for “weight loss” returned 75,000,000 results, with “diet” and “fat” getting even more, and “weight” returning 1/2 billion results! Weight loss is certainly a common concern, but searches on other health topics also yield millions of results.

The results range from the Mayo Clinic to herbal remedies “As Seen on Oprah”. Most health seekers gather “health advice online without consistently examining the quality indicators of the information they find“. Information and health literacy impact the search results people select and the sites they use. Poor information literacy skills impact people’s ability to discern the quality of information. Poor health literacy skills – the lack of understanding about health coupled with the emotional burden of health concerns – make it far too easy for people to desire and seek magical cures or easy solutions. There are few reliable indications of quality; the only “Good Housekeeping Seal of Approval” in health is HONcode.

Sites vary in their usefulness, accuracy, branding, presence of advertising, and amount of interactivity, to name a few attributes. The most heavily used sites are WebMD.com and RevolutionHealth.com, both covering all diseases and conditions. Other sites are more specialized, such as Leroy Sievers’ heavily commented cancer blog at NPR.org, the very focused discussions on the Road Back Foundation bulletin board, and the well-segmented and very active community message boards at Weightwatchers.com. There are millions more examples, well-designed and dreadful, heavily used and ghost towns, frequently updated and unchanged in 10 years.

With consumer-directed care, patients are being asked to play a greater role in their health care. Providers are putting considerable effort into Electronic Health Records, Pay-for-Performance – countless initiatives to improve quality, reduce errors, and cut costs. But when a someone lies in bed at night worrying about their own health or that of a loved ones, EHR privacy is unlikely to be what is on their mind. Turning to the internet is easy with the constant availability – no need for an appointment or co-pay.

Consumer health sites have a significant impact on the quality of life of their users who turn to them before – or instead of – seeking medical help. Many doctors don’t know what their patients are doing online, and many dread the patient who arrives at an appointment armed with search results. “There’s so much information (as well as misinformation) in medicine — and, yes, a lot of it can be Googled — that one major responsibility of an expert is to know what to ignore,” but patients often lack that expertise.

That is where the disconnect lies between patients and doctors: that the time spent online is invisible to or an annoyance to a doctor but is a lifeline for many patients. Doctors need to understand and learn from their patient’s information seeking behaviors. And there is a lot to learn since what patients communicate online is a very different lens on their concerns and needs than what a doctor hears during a consultation, which is a small snapshot of how the patient is feeling, provided in a location much less comfortable than the patient’s home. And doctors need to “prescribe” sites with reliable and useful information, and online health communities where peer support is available.

Technology is not the answer, even good design is not the answer – although both can help. So can better information and health literacy skills. The greatest impact will come from bridging the chasm between what patients are currently doing online and what takes place during the doctor-patient consultation.

March 7, 2008 at 9:36 am 5 comments

Patient, Heal Thyself: How to Succeed with Online Consumer Health Sites

I spoke today at the Massachusetts Technology Leadership Council Healthcare Lunch & Learn Series on Patient, Heal Thyself: How to Succeed with Online Consumer Health Sites. My co-presenters were John Lester (also known as Pathfinder Linden) who left Second Life for Waltham and Amir Lewkowicz, co-founder and Vice President for Partnerships at Inspire. I will post my notes shortly but until then, here is the abstract:

With consumer-directed care, patients are being asked to play a greater role in their health care. Moreover, those with chronic diseases often get better counsel from other sufferers than they do from physicians. This talk will cover the most effective ways to design and evaluate online health communities.

Changes in the health care system and the pervasiveness of the Internet have led to an increased use of the Internet by health care consumers. 80% of people in the US who use the Internet are using it for health searches.

Health web sites and online health communities provide a means for patients and their families to learn about an illness and seek support. The importance of online consumer health is evidenced by the popularity of sites such as WebMD and RevolutionHealth. Consumer health sites have a significant impact on the quality of life of their users who turn to them before seeking medical help.

Health web sites and online health communities raise difficult design challenges. These challenges include wide variability of participant’s medical expertise, health literacy, and technology literacy. A major risk is the potential consequences when poor advice is taken or when professional treatment is not sought.

By participating in this interactive discussion you will learn:

1) How online communities benefit consumers and businesses
2) How the nature of the disease or illness impacts site design
3) How innovative Web 2.0 technologies can enhance participation
4) What is necessary to start and sustain successful sites

March 6, 2008 at 2:16 am 6 comments

Case Study: Reviewing the Cancer Survivor’s Network

Jeff Johnson told me about his experiences doing a usability review of the American Cancer Society’s Cancer Survivor Network. I was interested in his process and the impact of his findings because design and usability are arguably more important in a health site than any other type of site because of health literacy. Most interestingly to me is that cancer survivors were not involved in the design or evaluation process by the design firm even after Jeff’s recommendation. Jeff wrote a description of the process and the impact of his findings:

In mid-2002, a web-design firm (NewSof Group) contacted my usability consulting firm (UI Wizards). They developed and maintain the American Cancer Society’s Cancer Survivor Network (CSN), a website supporting cancer survivors, cancer patients, and their caretakers. In preparation for a planned site revision, NewSof Group wanted an independent usability review of the site.
Before beginning the review, I requested and received the following information from NewSof:
– The overall purpose or mission of the site,
– Important end-to-end tasks the site is intended to support,
– The parts of the site to be included in the review, and parts to be excluded,
– Known problems and concerns pertaining to the site’s usability.
The mission statement of the site was given as: “To be a vibrant community of real people supporting one another and sharing our personal experiences with cancer in our own way, with our own words. None of us need to make the cancer journey alone. We wish to help people find and connect with others like themselves and learn from the experience of others like themselves.”
Obviously, CSN users are not assumed to be technically skilled, so the site has to avoid using technical jargon and exposing technical concepts.
The parts of the site to be reviewed included all of its main sections, e.g., About, Calendar & Announcements, Expressions Gallery, CSN Email, Member Web Pages, Resource Library, Sign-In & Register, Comments, Help. The primary tasks to cover in the review were those supported by the included sections. Accessing all important areas of the site required me to register as a site-member. Aspects of the site excluded from the review were links to the American Cancer Society’s main site, the Spanish or Chinese pages, and details of member-posted content.
Previously known usability issues in the site included:
– Search
– Chat
– CSN email
– Clarifying data-sharing restrictions mandated by ACS policy and medical privacy laws.
As I was reviewing the site, I found I had questions and needed clarification concerning its function, the designers’ intent, and implementation constraints. I emailed batches of questions to my contact at NewSof by email, who either answered them immediately or forwarded them to developers who answered them.
To provide quick feedback so the developers could begin work revising the site, I compiled a preliminary list of usability problems and recommendations and sent it to NewSof as a simple email message. I then refined the preliminary report to provide a more comprehensive, categorized and prioritized list of problems and more complete recommendations. The 36-page report documented 181 potential usability problems, some supported by screen images, and most with recommended remedies. Many reported problems concerned overly wordy and unclear instructions, for which my recommended improvements were rewritten and shortened text. Other problems concerned insufficient navigation cues, inconsistent placement of Search boxes, difficult-to-learn functions, overly tedious operation of some common functions, unclear link labels, and wasted page-space.
I submitted the report to NewSof, and after a few days they pronounced it “just what we needed” and declared the consulting engagement concluded. As a follow-up, I recommended that NewSof consider hiring a usability consultant who actually is a cancer patient or survivor. I knew two who were willing to have me refer NewSof to them. I don’t know if NewSof ever contacted them.
Since I was still a registered CSN member (and still am), I occasionally have checked to see which of my recommendations they implemented. The short answer is: some, but not all. They reduced the volume of verbiage significantly, in some cases using my recommended rewording and in others devising their own. They ignored other recommendations such as conserving page- space.

January 28, 2008 at 1:49 am 1 comment

On Motivations to Contribute Knowledge and the Accuracy of Self-Assessments

Have you ever written a Wikipedia entry? I wrote an entry on Online Health Communities and also wrote about the process of submitting an entry (and keeping it there) in eLearn Magazine.

Jimmy Wales (founder of Wikipedia) and Rich Baraniuk (founder of Connexions) wrote an op ed piece for the San Francisco Chronicle, which concludes, “Everyone has something to teach. Everyone has something to learn. Together, we can all help transform the way the world develops, disseminates and uses knowledge. Together, we can help make the dream of Open Education a reality.”

I agree that everyone has something to teach but can everyone teach? Can everyone write? As Editor-in-Chief of eLearn Magazine, I have seen submissions with great ideas that were well-written, ones with great ideas that were poorly written, and so on. Clearly not everyone can write, but I still appreciate that they are motivated to express their ideas.

The November 2007 issue of CACM had an article about what motivated Wikipedia contributions and the primary motivation was fun. A blog post “hypothesize[s] that the motivations for participating in volunteer question-answering services are different from participating in projects to create open information sources.”

I would like to hear more about the processes that Jimmy and Rich think should be set up to facilitate knowledge sharing. Will people contribute for fun or will they have other motivations? I thought I knew a lot about Online Health Communities when I wrote the original Wikipedia entry, but what if my self-assessment was flawed? Or what if I was knowledgeable but unable to express my ideas clearly? However, I certainly agree with Jimmy and Rich’s goals.

I also agree specifically about the value of current information, since there are no reasons other than historic for including Pluto in a list of planets. And I know that my college Astronomy course does not qualify me to write about Pluto’s current classification.

January 24, 2008 at 7:42 am 5 comments

When do people think or worry about health?

As a start to writing my book, which is my new year’s resolution, I am writing blog entries about the ideas I have associated with the topic of online consumer health. My first topic is when people think or worry about health.

In early January, it is clear that much thought centers around new year’s resolutions to lose weight (arguably the most common), stop smoking or drinking, eat healthier, sleep more, etc. (I just read that making more resolutions is better than a few because the end result is better.) People also think about their health when they are in pain or discomfort. People think about their health when someone close to them or someone in the news has health problems, and in reaction might implement a healthier lifestyle after losing a close friend to heart disease. People think about their health when they read an article about health, and certainly the popular press is full of news about results of studies and their implications. Similarly, people think about health issues when they see pharmaceutical advertisements – and possibly when they read spam that is health-related. And finally people think about their health in preparation for, during, or following a doctor’s visit.

Is their much difference between how people think about their own or other’s health? Probably the relationship is key. As a parent I worry more about my children’s health than my own.

From a health literacy perspective, how much do people think about a health issue in an accurate or constructive manner? It may be that emotions, such as fear, have a huge impact – in either direction, depending on the person and situation – on the actions people take.

When do people go from thinking or worrying about health care to taking an action, be it talking to someone (friend, family, stranger, or professional) or looking online? Is there a trigger like fear or pain or a threshold to their worry?

January 4, 2008 at 10:18 pm 5 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: lisa.gualtieri@tufts.edu

@lisagualtieri


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