Posts tagged ‘online consumer health’
End-of-life decision-making is an increasing pervasive topic that has personal, political, legal, and, of course, medical implications. George Lundberg, MD said that “every American deserves the right to choose to have a death with dignity and as pain-free as medical science and practice can provide. To achieve that, patients and physicians must discuss the options for managing an upcoming death.” Atul Gawande, MD wrote in Letting Go: What should medicine do when it can’t save your life?, “But rarely is there nothing more that doctors can do. They can give toxic drugs of unknown efficacy, operate to try to remove part of the tumor, put in a feeding tube if a person can’t eat: there’s always something. We want these choices. We don’t want anyone—certainly not bureaucrats or the marketplace—to limit them. But that doesn’t mean we are eager to make the choices ourselves. Instead, most often, we make no choice at all. We fall back on the default, and the default is: Do Something. Is there any way out of this?” Gawande told about La Crosse, Wisconsin, where, by 1996, 85% of residents who died had written advanced directives.
La Crosse is the exception. Rational, informed decision-making is difficult; most people don’t know much about advance directives and don’t have good resources to learn about the many facets of end-of-life decision-making. Enter Mardi Coleman, a Master of Science candidate in Health Communication at Tufts University School of Medicine. With a background in geriatric mental health and an interest in how healthcare can meet the Institute of Medicine’s aims for a system that is efficient, equitable, effective, timely, patient-centered, and safe, she designed a end-of-life decision-making website in Online Consumer Health. The overarching goal of the website, as described in her final paper, is “to provide information that allows users to make informed end of life legal, medical treatment, and service decisions,” specifically to:
Help users clarify their understanding of their beliefs and values regarding end of life, treatments, and services, including that beliefs and values are situational and change over time.
Provide the types of information users need or want regarding advance directives, life-sustaining treatments, and services that extend or support the end of life in order to make informed decisions.
Engage first-time users and invite reuse because the website is attractive, well laid-out, and easy to use, and contains information that is relevant across many stages of decision-making.
While being part of a well-known and reputable organization can have many benefits, not having a visual identity can be a liability on a website intended to help people. This is the case with the Benson-Henry Institute for Mind Body Medicine at Massachusetts General Hospital, whose website provides little information without exploring. Claire Berman, who is working on a Master of Science in Health Communication at Tufts University School of Medicine, was a student in my Online Consumer Health course and, for her project, redesigned the Benson-Henry Institute (BHI) site. Her process included the development of personas, such as Paul, a 35-year-old Newton, MA resident with a stressful job and a family history of heart disease, who is skeptical about complimentary and alternative medicine (CAM). Paul needs to understand immediately how BHI’s website may be able to help him when viewing he views it for the first time, especially because of his skepticism. Claire developed other personas, and showed that the current site design and structure is unlikely to appeal to them or provide them with the information they are seeking. With BHI’s goal to “improve the health status of site users through mind-body relaxation techniques,” Claire’s recommendations for a different look and content are likely to help them achieve their goals. Read Claire’s final paper, with personas who can benefit from BHI’s content and a competitive analysis looking at Gaiam Yoga, Center for Mind Body Medicine, Mind Body Medicine Center, and Mind Body Medicine.
Many food and health websites include the services of a nutritionist to answer consumer questions by email or on the site. Vicki Koenig, MS, RD, CDN is a Nutritionist who works for Stonyfield Farm and one of her responsibilities there is responding by email to “Ask our Nutritionist” questions. Vicki receives between 40 and 70 questions a month and answers them all individually, although for some she peruses her archive of her previous answers, which is categorized by topic, and the articles she wrote for the site. The most common are gluten-free, diet, and probiotic questions. People are also interested in where the milk comes from and how the cows are treated. There are many “off-the-wall” ones; the strangest of which was a request for a yogurt-covered dog biscuit recipe (which she found and sent). One of the most absurd was someone asking can your stomach explode from a food-eating contest (it can’t, Vicki assured me).
Despite their disclaimer (The information provided by our nutritionist is not intended to diagnose, treat, cure or prevent any disease or give medical advise [sic]. Always consult your family health practitioner before altering your health regimen) people ask Vicki questions that are out of the context of her role. There are many from people who are desperately looking for answers to serious health problems, and she refers them to sites like the American Dietetic Association or other profession organizations. For instance, someone recently wrote that she has lupus and wanted to know what to do, and Vicki provided links but not a personalized diet.
To ask Vicki a question requires a name and email address, which makes sense since she responds by email. There is also a picture of her with her daughters and a bio; both make her seem very human and welcoming. When I asked, Vicki said that she needed to update the picture since her children are older now and that a marketing person contributed to part of the bio. She emphasized that she is very human. She stated that she’s a health professional, working mom, business partner with her husband and a consumer too.
Vicki also answers some of the questions that arrive through Facebook especially if clarification is needed. She contributed to the FAQs on the website and wrote all the articles in the Healthy Tips Library. She doesn’t respond to Twitter. Vicki has her own Facebook page, which she uses frequently, and a less used Twitter account. Her private practice has a website as well, which links to her Stonyfield articles (but does not include an Ask the Nutritionist feature).
One of the things I was curious about, especially after learning the volume of questions Vicki gets, was why Stonyfield doesn’t promote Vicki’s Q&A more and why it is done as private correspondence as opposed to being displayed and archived prominently on the site. Stonyfield’s response was:
We agree that our Ask our Nutritionist is a valuable and beneficial feature for our consumers. We can and should do a better job at featuring some of the frequently asked questions that consumers raise as they relate to health through good nutrition and organic foods. We tried to address this by providing related topics in our Healthy Tips Library, as well as focus on key product attributes that Stonyfield can deliver i.e. DHA, Omega 3s, etc.
I looked at a few other food company websites: Del Monte and Lean Cuisine are two that offer a list of Q&A with a nutritionist. Del Monte’s features a picture and bio of their nutritionist and an uncategorized list of questions with the promise that a new one is answered weekly from those submitted. Lean Cuisine has far more questions which are selected from some of “the most popular ones” asked and categorized. While the topics make sense, not all categories are populated. Some of the answers include product promotion. There is no bio with the picture of the nutritionist and registration is required to ask a question. Both are easy to find from the home pages.
The Dana Farber Cancer Center website includes a categorized Ask the Nutritionist Archive. The questions and answered are very detailed and specific to cancer patients. They also include a first name, last initial, and city and state, making them seem more authentic.Like the Stonyfield site, they are hard to find (without doing a search).
The Massachusetts Department of Public Health has an Ask the Nutritionist blog, where the comment field is used to ask questions and the answers are included below the question. While not categorized by topic, they are scrollable and many are very detailed and specific. There is also a picture and name but not a bio of the nutritionist. The blog is hard to find from the Dept. of Public Health site.
Go Ask Alice, a website developed by Columbia University primarily for college and high school students, has a page of nutrition questions. While the people responding are not identified by name or picture, the site states that all questions are answered by a team including Columbia University health educators. Each question includes the date originally published and the date last updated/reviewed and ends with links to related Q&As.
Curious I searched a little more and found other examples. Some, like Meritus Endocrinology, have an extensive archive while Washington Hospital Center’s Ask the Dietitian has a short list of questions. All the ones I found archived questions, although without any identifying information or a date, and most made it easy to ask questions. Stonyfield is therefore unusual in not providing an archive of questions.
If I was redesigning the Stonyfield site, I would include Vicki on the home page and let people coming to the site know that she is available to answer questions because it is such a valuable service and one that benefits the company in the helpfulness of this service to those who manage to find it on the site. (Of course, if more people know of Vicki’s availability, then her services might have to be limited.) I would include Vicki’s most recent Q&A on the home page with a link to the archive as a draw. Finally I would include at least a partial archive of questions and answers and, like Go Ask Alice! would include a date, and, like Dana Farber, would include at least a first name, city, and state because it makes it seem more like it came from a real person. However none of the questions I looked at on the above sites were generic or seemed fabricated because of the level of detail. The archive could prove valuable since someone else might have a question that you didn’t think to ask but benefit from. While there is already an enormous amount of information available online, the credibility of a nutritionist and the easy to digest (not an intentional pun) format of a Q&A could only benefit Stonyfield and allow more consumers to learn from other people’s questions and Vicki’s answers.
Looking for Health in All the Wrong Places: What Can Health Website Design Learn from Online Dating?
Online dating is one of the most successful online businesses. They even have an ideal pricing model: people often pay more expensive monthly fees because they optimistically expect not to need the less expensive longer term charges. Since any online trend or success has implications for sites for other purposes, I was curious about the implications of the success of online dating websites for health website design. I contacted Mark Brooks, an analyst and consultant to the internet dating industry who runs the industry news blog, OnlinePersonalsWatch.com.
Lisa: What is the newest trend in online dating? Is there an online health parallel?
Mark: Niche dating sites are springing up for every imaginable niche. Support groups, similarly: whatever the illness, there’s a support group online, which can be of tremendous comfort and provide sharing of useful, life-saving information.
Lisa: Online dating is trying new approaches to matching people. What works best, in your opinion?
Mark: Personality profiling sites aim to go one step further than typical dating sites. Typical dating sites allow search. So you can find people who meet your wants and needs. But people don’t really know what they want, until they see it. Personality profiling sites like eHarmony allow people to ‘not fall in love with the wrong person.’ They do the hard work of fixing people up, and use the best information available today, on psychology, sociology, anthropology, a la matchmaking.
Lisa: Do you personally try out online dating sites?
Mark: I prefer meeting people in real life, at parties and through friends of friends. I love speed dating, parties, and meeting people in real life. I’m not so keen on internet dating. But I’m married, so I’m off the market.
Lisa: Which features do you like best in sites?
Mark: Personality profiling and webcam based dating, along with location-based services that help people find matches to people nearby them.
Lisa: Do you go online when you need health information? Can you recount a recent time – why you went online, what you found, and if you sought professional care?
Mark: I’ve not been ill, ever, really. But when I am, I’m heading online to check what my doctor tells me.
Lisa: What can online health learn from online dating?
Mark: I’d love to see a search engine that matches people with other people in support groups, like them. Same illness, same geographic area.
I gave a talk at the MA Department of Public Health this week and started with a game called Hot or Not. I showed screen shots to get people’s instantaneous reactions, my point being that people leave a site if is not appealing. One of the sites that was considered very “hot” was Lu Xing’s beautifully-designed home page from her final project in Online Consumer Health at Tufts University School of Medicine.
Lu, a graduate student at Emerson College working toward a master’s degree in Health Communication, designed a site, “Safe Fish, Smart Baby: Fish Consumption Advice for Pregnant Women” that was motivated by “the fragmented information that pregnant women have received about the nutritional value and health risks associated with fish consumption resulted in confusion and misperceptions.”Lu’s aim for to “create a credible and professional website that provides clear fish consumption advice, fish coupons, and fish preparation skills for pregnant women, to help them make informed fish consumption decisions, so that they can have a smart and healthy baby.” Her paper describes the steps she took to design her site. Lu and I welcome your feedback on her well-written and insightful final paper.
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.
When you design or redesign a health website (or any other type of site), you increase the likelihood of success if your site is better than or different from anything else available. A competitive analysis is a systematic analysis of “competing” sites to learn from them.
I teach how to conduct a competitive analysis and assign it to my students in Online Consumer Health, which I teach in the fall at Tufts University School of Medicine. The Competitive Analysis Worksheet I give my students has been refined over time. One of my students, Claire Berman, gave me permission to post the competitive analysis she did of the Benson-Henry Institute Mind-Body Medicine (BHIMBM) at Massachusetts General Hospital. It is an excellent example of how much can be learned through this process.
Gary Schwitzer is Publisher of HealthNewsReview.org, where he and his team grade daily health news coverage. He works to improve health journalism with the goal of improving consumer knowledge and decision-making. He was the founding editor-in-chief of the MayoClinic.com site. While his guest lecture at Web Strategies for Health Communication was on health news reporting, I realized that his review criteria seemed equally applicable to any health content and asked him if he agreed:
LG: You critique health news stories and provide guidelines for health journalists; do your guidelines apply to all health writing using the web and social media?
GS: I think our ten criteria could be applied to any form of health communication, perhaps including one’s interaction with one’s own caregiver. They may be even more helpful or relevant for health writing on the web or in social media, where standards may sometimes dip a bit.
LG: Do you have recommendations about how to create titles that accurately reflect content yet are enticing? Looking at recent titles of articles you rated, some are descriptive but some are more sensationalistic, almost what you would expect to see on the cover of Cosmo.
GS: We often see solid reporting that is undercut by a sensational headline. Good journalism, good writing, good communication doesn’t need the sensational title or headline to “sell” it. In TV news, for example, it’s not only the headline that matters but the “tease,” the promotion, the visuals, the introduction. Someone with a publishing concern must take responsibility for the total package of what is communicated.
LG: What about how to write accurate yet enticing, snippets of articles? This is important when the entire text doesn’t appear on a home page and is increasingly important in social media when the number of characters may be limited.
GS: It is possible to convey accurately with balance and with relative completeness even in TV news or in a web “abstract” or in social media. Of course, with the latter, the use of links to flesh out the “completeness” is not only possible but desirable. I learned how to do a pretty good job even within the constraints of TV news during my career and am now trying to learn to do so even with the 140-character constraints of Twitter.
LG: What advice do you have for health communicators who are creating web or social media content?
GS: Content is still king. Substance over flash. Steak over sizzle. There is a tremendous responsibility to get things right on these vital health and health care topics. Increasingly, I see the value and importance of being correct – perhaps at the expense of not being first. We need to understand that there is true harm that can be done with inaccurate, imbalanced, incomplete communication on health care topics. Our first and greatest responsibility is to our readers – not to the perceived style demands of our medium or format within which we work.
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.
I interviewed Tania Schlatter, one of the best designers I know and a guest-lecturer for Web Strategies for Health Communication (pictured to the right), about color, imagery, and other aspects of health website design.
Lisa: How is the design of health websites different than for other types of sites?
Tania: The design of any site goes back to the goals of an organization and what people coming to a site need. Healthcare consumers can be overwhelmed and are in need of highly credible information. While every individual has different issues, healthcare consumers are similar in their need to conduct research and apply what they find to their situation.
Lisa: What are some examples of successful sites in your opinion?
Tania: I like Patientslikeme and WegoHealth in part because they use different models to help people manage their health better. The new Mass General site puts information first and has a navigation scheme that does a pretty good job of making that information findable. Healthcare websites overall do not have inspirational visual design, although AthenaHealth is very nice.
Lisa: Why aren’t health websites inspirational? What would happen to consumer health if they were?
Tania: From the practical perspective, healthcare is about people, and it is very hard to show health-related vignettes that are real. Health-related stories and imagery slip into being sentimental or sanitized, neither of which are inspirational. No one wants to show or tell the real moments in healthcare. There are privacy issues, and anything staged looks and sounds that way.
Change – and inspiration – is only going to come from consumers. They own their stories, fortunately. I have a friend who is a breast cancer survivor and who has ovarian cancer. She posts photos of herself on Facebook. She is incredibly beautiful and strong throughout it all – truly inspirational. Fortunately her images are private, and they should stay that way unless she decides otherwise. I hate to imagine patients selling their stories to help any site – other than one that they control or that is truly for the common good – look good.
Sites that provide accurate information in a findable way with enough depth and context to be helpful are doing what they can, given the circumstances. There are a lot of content-rich heath-related sites out there. More can be done on these sites to improve visual and information presentation hierarchy. There are a lot of exciting developments that can help. Designers now have many more fonts available to use (see typekit.com) and HTML 5 and CSS3 are enabling more layout options and greater control. On information-rich sites typography and layout can be designed to highlight higher-level information visually, break up detailed information and provide video that aid in the explanation of content.
Lisa: Speaking of imagery, many sites use stock images of smiling people, yet the sites are often about serious diseases. What makes imagery appropriate for a health site?
Tania: Appropriate imagery related to health helps inform, so while not visually appealing, photos that show what the text is describing are appropriate. These images need to make sense visually for the audience, so it is important that they are accurate and informative. One way to deal with photos that are informative but not so nice to look at is to use them small and allow the user to click to see them larger.
Photos of caregivers/providers are appropriate and helpful, both as headshots with biographical information and showing people in their working situations. Showing healthcare workers on the job can be an effective way to help site visitors know what to expect from an unfamiliar situation. For example, seeing practitioners with a patient in the care setting can help people imagine themselves in the situation and manage anxiety about an upcoming visit. Patients need not be shown – their back can be to the camera – but it is great to see both the provider in action and the environment. Sometimes organizations are resistant to using pictures of staff to help set the tone on a website because they do not want to show people who might leave the organization. If the images are used to set a general tone (as opposed to identify specific personnel) then the concern is purely an internal one. Site visitors are not that literal in their reading of photos, and the photos can still be effective.
Lisa: Color is one of the most noticeable things in a site and, I imagine, one of the areas where a designer is dealing with opinions, taste, trends, and recognizable branding both from colors that are associated with companies or with diseases (like purple for Alzheimer’s disease). What is the best way to select colors and a color palette? How does a site color scheme work with advertising? I ask this because I just saw MyDr.com.au where the advertisements are by far the most vivid parts of the home page.
Tania: Color is a tool that helps set a tone and create visual relationships. Color needs to be selected based on strategic goals, not subjective preferences. For example, it is a great tool for helping information-rich sites be more legible and navigable. The BBC Health site uses color to consistently distinguish navigation from content, which both looks great and helps the user.
If an organization has colors that it uses in non-web communications, the designer and client team need to consider if it is desirable to link the website to other communications visually. If it is, then using the same color palette is an excellent way to do that.
MyDr.com.au looks like it is trying to balance the need to convey useful information with the need to make money from advertisements. If the site is more colorful the ads will be less prominent, which could be a problem for the site’s bottom line. The site’s use of blue with a little brown is consistent which helps the user distinguish editorial content from promotions and which may help visitors focus on content.
Lisa: When do features like the slideshow used by WebMD and countless other sites, or the less ubiquitous Ask the Expert column, work well for a site?
Tania: Slideshows are a way of marketing or conveying topical information. They don’t work for conveying important content because it is unlikely that a user will see all the slides. Ask the Expert can be valuable especially when a qualified person provides answers. But is all comes back to site goals.
Lisa: Describe the process of defining clear goals.
Tania: Goals come down to knowing who you are speaking to and their needs. Site owners need to know this, segment their users, and then use all the tools they can – from site analytics to in-person usability testing to understand how effective their site is. My biggest recommendation is to be close enough to users to know if you’re hitting the mark through processes like regular usability testing and an advisory council used to help inform feature or other strategic decisions a few times a year.
Lisa: I know from experience how few organizations actually do that. Is that your experience as well?
Tania: There is a lot of resistance to having direct contact with site users. Communicators like the idea but many shy away from doing it. It is uncomfortable to open your work to the people who use it. I think people worry that if they knew what their users wanted they would have to provide it, but that is not necessarily the case. Sometimes knowing what people prefer can help even if preferences are not in line with organizational goals. I was working on a logo redesign for an established organization. Designs were down to two options. One was modern and cutting-edge looking. It captured how the organization said they wanted to be perceived. The other was traditional – precisely what stakeholders said they wanted to avoid. However, the traditional design was favored by the majority of the audience – people who were considered to be “users” of the logo. We knew that going with the traditional logo would be a mistake for the organization, however there was significant pressure to go with the preferred option – it was what people liked. The bottom line is that you need to know what people like and why. When we thought about why the cutting edge logo was off-putting we realized that the organization had undergone several re-orgs in a short amount of time. People were not interested in change. They wanted stability, which is what the traditional logo represented. Once we figured out that change fatigue was behind the preference, we could push the cutting-edge logo with confidence because we could address their concerns in other ways. It takes some work to use user input in a way that is truly strategic. The thought is overwhelming to people who may feel that they have too much input already. It’s ironic since it’s the most helpful thing they can do.
Lisa: Can participatory design be successful, when users are involved from the start in the design?
Tania: Absolutely, it’s a great way to use people who are your audience or to get stakeholders directly involved in design issues. But again, having people participate in the process does not mean that they are designing the end result. Participatory design is a method for acquiring an understanding of end users’ (or stakeholders) situations, motivations and goals to inform the design, not create it.
Lisa: We worked on a Latino Alzheimer’s caregiver site together where there was significant expertise among the team but no representative users until the evaluation phase. Is that typical?
Tania: Yes, it is hard for people to understand that they don’t know their customers, or that they can learn more by having them closely involved.
The Boston Globe reported on the sentencing of a former US Airways Express pilot, Stephen Sharp, “for selling a powdered drink mix over the Internet that he claimed was ’100 percent’ effective in helping drug-using truck drivers, pilots, and train engineers pass federally mandated drug tests.” The ungrammatically-named “yourintheclear.com” no longer seems to exist.
Mindful of ongoing debate by Gilles Frydman and others about indicators of health website credibility, I searched for other sites selling similar products (there is no shortage) and looked on sites like Craigslist where people post questions about how to pass drug tests and how to detoxify. Based on a quick perusal, I found answers ranging from product advice that I suspect is similar to what “yourintheclear.com” sold to more than I ever want to know about urine temperature to what seemed like common sense advice.
Equally fascinating, in my searches I found airlinepilotforums.com/ where stephensharp “set the record straight”, ironically, under a picture of a smiling pilot selling Dr. Schulze’s Detox Food. stephensharp explains all, from the name (“No one would type in ‘Your’RE or Youre in the clear’, I tested it”) to the product’s purpose (it “was nothing more than a diuretic to help flush your body”) to the promotional text (“it did mention unfair drug testing and various drug cutoff limits”).
The explanation went on to talk about the random drug testing in the airline world and how in 2003 he started Wholesale Organic Herbs – Gourmet Spices For Top Chefs and Organic Herbs And Cooking Spices. The websites look like they haven’t been updated since 2003. They also have a social media presence that promotes their products and include “Fun Facts”, such as “in 2005, the U.S. produced 42 percent of the world’s corn”. I tried out some of their fun facts on my 11 year old, who often emails me from a random facts app and loves Ripley’s Believe It or Not, and she didn’t think any of their fun facts were the slightest bit interesting.
Poor website design isn’t a crime, nor is poor social media use. So, what happened? According to stephensharp, in 2008 some of the other “online stores were raided as a result of operation True Test overseen by PA district attorney Mary Beth Buchanan… With much criticism in the press towards Buchanan as far as being overzealous and abusing her power I simply have no comment to make. I am not here for a finger pointing war. You can google her and make your own judgements. She faced termination in late 2009 and stepped down from office.” He went on to say that he didn’t think he “was selling anything illegal as still today there are hundreds of web sites selling detox products.” stephensharp concluded, “I am also on unpaid leave now with a future meeting planned and my future uncertain.”
Well, the next nine months, the length of Stephen Sharp’s sentence, are certain. His request for probation was rejected, and his attempt to express regret for the impact on his family was silenced. One only hopes that the ultimate impact of this is that other people with similar types of sites close them down before being caught. One also hopes that the reporting of Stephen Sharp’s sentencing raises awareness of the need for consumer vigilance.
Diana Cole told me, “The internet saved my life,” and recounted a story about using the internet to identify a bat bite and learn about rabies in bats, leading to an emergency room trip. She later introduced me to her sister, Carolyn Kingston, who attributed her successful outcome from hip replacement surgery to her use of the internet. I asked Carolyn about her general use of the internet for health, her specific use for her surgery, and the blog she started to record her surgery and recovery.
Lisa: When did you start using the internet for health information and why?
Carolyn: I’ve been using the internet for health information for years, mostly to supplement and clarify information I get from my doctor. For example, as a person who has had chronic colitis for many years, I explored a number of sites searching for alternative treatments that would help cut down or eliminate some of the strong medications used in traditional medicine. I found a book online with a holistic dietary approach, which I followed during flare-ups for a month or two at a time for several years with limited success. Ulcerative colitis is tricky because up till now doctors have no idea what causes it.
Lisa: Do you and Diana discuss your respective internet use?
Carolyn: Diana and I often discuss and share information about use of the internet for health related issues. Her experience with the bat bite is an example. My health-related searches on the internet are usually very targeted, and directed toward answering a specific question rather than broad, generalized browsing.
Lisa: What led up to the hip replacement surgery Diana told me about?
Carolyn: I first noticed discomfort in my right hip about 8 years ago. In the last few years X-rays and an MRI showed increased deterioration of the cartilage in the hip joint and an increasing narrowing of the space between the ball and socket of the hip – typical of degenerative osteoarthritis. The time to have hip surgery is determined by how it feels, not how it looks, so it is largely the patient’s decision. With regular low impact exercising, such as swimming, walking, yoga, and tai chi, and herbal remedies, such as Glucosamine Chondroitin and fish oil, I managed to keep going pretty comfortably until the last few months. Even then it was not as much chronic pain but lack of mobility and the ability to enjoy exercising that was the impetus to schedule the surgery.
Lisa: At what point did you start searching online?
Carolyn: In January 2010, right after making the appointment for surgery on April 7. I’d seen my orthopedic surgeon for the second time in December, looking for a medication stronger than Naproxen and Tylenol. He prescribed Tramadol and we discussed whether to have the surgery now. Basically it was left up to me – a wait and see how it goes situation. In my first appointment with him about a year before he described in detail the advantages of the newer anterior approach to hip replacement, that the entry was more toward the front of the hip resulting in less bleeding, no cutting of muscles, and faster recovery time. In addition titanium is now used for most of the replacements, so it lasts longer, up to 25-30 years.
Lisa: What information were you looking for?
Carolyn: My first internet search was to find out more about “anterior hip replacement” and there was lots of information out there, including medical websites describing all the advantages and testimonial blogs by patients. I found few negative testimonials about this approach to hip surgery. What I did not use the internet for was to look for alternatives to surgery, and there were many ads on sites I visited claiming various ways to avoid hip replacement. I also did not research surgeons online because I was fortunate to have an excellent surgeon whom I liked, as well as the positive testimony of a friend who’d had a very successful result with the same surgeon several months before.
Lisa: Diana told me that you learned things online that led to a good outcome: what were they and could you have learned them in other ways?
Carolyn: What I learned online was very helpful both pre- and post-surgery. I found sites that had lists of pre-op exercises, which I printed out and began doing faithfully 6 weeks before the surgery. I found checklists of how to prepare your home for post-op recovery. I searched Amazon for books and ordered two, plus a meditation tape on preparing for surgery recommended by my therapist. I could have found out these things through my health plan, but this was efficient and didn’t involve making an appointment. To satisfy my need for information I ordered online the 2010 version of John Hopkins paper on Arthritis and set a “Google Alert” on current media articles on hip replacements. Some of this information was useful for the short speech I gave in March to my local Toastmasters Club on “Making Medical Decisions.” Post-surgery I felt ready to watch a step-by-step video of how this particular surgery is performed. I was also interested in how long it would be to recover full muscle strength in the muscles of my right leg.
Lisa: Did you look for specialized information, such as concerns you had as a singer? Were these searches successful?
Carolyn: I googled the length of time post-surgical effects of general anesthesia and the effects of intubation on the singing voice. On that issue I did not find any helpful information.
Lisa: How has your experience influenced your attitude toward using the internet?
Carolyn: My attitude toward using the internet is very positive. I use it to educate myself and to find reassurance, but not for self-intervention. I am very wary of sites that make claims to heal you in X months or days. The internet is an amazing resource which I use daily for one thing or another and I am grateful for its existence.
Lisa: I saw the blog you started, Becoming Hip. Can you tell me why you started it and why you didn’t continue it? Have you read other health related blogs and, if so, did you find them helpful?
Carolyn: I started my blog partly to learn how to set one up but primarily to share my feelings and thoughts day-to-day about my upcoming surgery with friends and family. It was also a way to remember my mother who died last summer and who had a total of three hip replacement surgeries, the first in 1978. In those days the prosthesis didn’t last as long, necessitating a re-do of her first one 17 years later.
Lisa: Why you didn’t continue it?
Carolyn: Somehow I got in the habit of writing my entries longhand (something I am used to doing in my journal) and never switched over to writing on the computer. Post surgery I wrote mostly to record the rehabilitation progress I was making which will be useful in the likely event I have the other hip replaced. Your question, however, has prompted me to transcribe what I wrote over the last 6 months and I am posting them bit-by-bit on my blog.
Lisa: Have you read other health-related blogs, how did you find them, and did you find them helpful?
Carolyn: I did read a number of other blogs and found them of varying usefulness. Some were way too self indulgent, others were very informative and encouraging. Recently I was concerned about muscle tightness in my operated leg so I Googled “muscle tightness post hip replacement” and found a very helpful entry on an Orthopedic website. It re-assured me that muscle tightness often takes several months to resolve.
Lisa: Did you – or do you still – follow any of these blogs regularly?
Carolyn: No, I don’t follow any blogs regularly. I usually just Google a specific question.
Lisa: Did you show your blog or journal to your doctor? Did you talk to your doctor about your internet searches or ask for recommendations of websites?
Carolyn: No, I didn’t.
Lisa: What advice do you have for someone in your situation based on these experiences, both your internet research and your use of a journal and blog?
Carolyn: If you are a person who likes to have a full understanding of what you will be going through, the internet is a great resource. It can’t replace personal conversations with your doctor of others on your support team but can give you more understanding and greater peace of mind.
As an avid reader of his blog and an admirer of his eloquence, I spoke to Dana on June 18, 2010 about why he started the blog, how he writes it, and how it has helped him through his prostate cancer.
Lisa: How did the idea of writing a blog first come up?
Dana: I have been a working journalist since 1980. In October 2008, I was working on my 6th book and having trouble writing because I was obsessing over having cancer. At the same time I couldn’t find what I wanted online about prostate cancer even though there is a lot of information out there. So I thought I could write about this. I wanted to give the topic a distinctive voice and be honest, not just about prostate cancer, but about cancer and about being ill. I was concerned about my family’s reaction, but I spoke to my wife and sons and they were fine about it. A colleague put me in touch with New York Times health blogger Tara Parker-Pope who responded positively to the idea. It happened quickly after that.
Lisa: What has been most interesting for you about the process?
Dana: The two most interesting things about it were the extent to which writing it gave me an opportunity to find out what I thought about different aspects of having cancer, and the reaction to my blog, which stunned me. I but didn’t expect so many men to respond that I was articulating things for them or women to respond that I was saying what they wanted their husbands to say.
Lisa: How many readers do you have?
Dana: I don’t really get a count of readers for each post but some, like My Brief Life as a Women, have had hundreds of thousands of views. And a few posts have over 600 comments. I knew my blog had become well-known when Whoopi Goldberg made fun of me on The View.
Lisa: Do you read all the comments?
Dana: I read most. New York Times Op-Ed columnist Tom Friedman gets hundreds of comments and I suspect he doesn’t read all his comments, but it’s a different type of writing. I am a big fan of the 2-3 sentence comment, but even the long ones I skim. When I read my blog comments, I see that they really like me.
Lisa: Are any comments helpful or supportive?
Dana: It is helpful knowing that I’ve been able to help people, that I made it easier for people to talk about and go through this process. I am happy to read the advice in comments but I’m a strong-minded person and have my own ideas. It cracks my wife and me up when people suggest crazy cancer treatments.
Lisa: Are there gender differences in who reads or comments on your blog?
Dana: More women read my blog than men. Men and women respond differently: women tend to be more insightful and understand the emotion I’m trying to convey in the blog while men are more focused on data: name, rank, serial number. Men are more emotionally stunted in our society and think they have to be tough.
Lisa: Have you shown your blog to your doctors?
Dana: My oncologists have looked at it off and on, also the radiation technicians. They appreciate what I have to say. But I don’t write for them because my obligation is to my readers and fellow cancer patients.
Lisa: Is your blog edited?
Dana: My primary job is as an editor, so my posts go through a few drafts and then Tara Parker-Pope reads them and she may have some edits or changes which I look at. Finally a copy editor reviews it.
Lisa: How does the New York Times promote your blog?
Dana: It appears on the Health page with my picture, sometime highlighted at the top. Some posts have appeared as a most emailed article, which itself increases visibility, just like when a book appears on the bestseller list.
Lisa: Do you read other patient blogs?
Dana: I don’t. I spend time reading every day, but I read the New York Times and I read books. I try not to lose myself on the Internet. I’m 52, a dinosaur from age of print, although my sons are amused that I blog.
Lisa: Can you offer any advise about reading other people’s blogs or starting your own solely based on your own experiences?
Dana: I really don’t because I had the benefit of working here at The Times. But, if someone is obsessed about their situation and wants to write, then they should go ahead. It’s a big ol’ Internet.
Jesica Harrington is a 5th grade teacher at Timber Trail Elementary School in Castle Rock, Colorado whose patient story was featured on the Johnson & Johnson (J&J) website and in their 2009 Annual Report. Jesica was diagnosed with breast cancer while pregnant with twins, lost one of the babies a month later, and “underwent a mastectomy before beginning four rounds of chemotherapy.” She searched for information online and found little on battling breast cancer while pregnant. Her father, who also searched, found out about a blood test that captures, identifies, and counts circulating tumor cells in patients with certain types of metastatic cancer, which Jesica asked her doctor to order. Jesica delivered a healthy baby boy, completed her cancer treatment, and is in remission. I contacted her because of my interest in patient stories, curious about how her story was featured by J&J and why she decided to tell her story in a very public way.
Lisa: You mentioned that being diagnosed with breast cancer when you were pregnant made it harder to find information. Did you find that the professionals treating were less prepared?
Jesica: Initially, the diagnosing doctor seemed insecure about diagnosing my cancer and in explaining how we would treat it. It was through our (mine and my husband’s) persistence that we went around the recommended procedure and sought out an oncologist directly to help us learn about what we would do with breast cancer and being pregnant with twins. My oncologist came highly recommended and had prior experience with women in my situation, so I felt I was in good hands.
Lisa: Did you search for information online about breast cancer and pregnancy, or did people recommend sites to you?
Jesica: I had friends send me all kinds of information, mostly success stories and current practices similar to what I was dealing with. I searched for answers as well, especially because I had so many questions. The problem was realizing there is a fine line between being/getting educated and just knowing too much.
Lisa: What did you find that was ultimately most helpful?
Jesica: Factual information about types of cancer, methods to treat, drugs and their side effects, and a couple of stories about local women, whom I talked with, who had been through breast cancer while pregnant.
Lisa: How did you learn about J&J’s test?
Jesica: My father was looking for methods to monitor how and if chemotherapy is working. He came across a local news story, which led us to a newly released test used at the University of Colorado Cancer Center (UCCC). He told me to take a look at the article, that it was something he thought I should do. I contacted a rep from the UCCC and inquired how I could take the test. I persuaded my oncologist to order the test and we went from there.
Lisa: Why did you decide to tell your story?
Jesica: People were interested in the information I had. I am a very private person, but also felt that this was something I had to share. I couldn’t keep it secret, when my own life affected so many around me (students, parents, coworkers, family, friends, neighbors, doctors, other women in my situation, media…) In the back of my mind, I hoped that my diagnosis and battle with breast cancer could and would be used for future references. After I had been diagnosed, all of my students and co-workers wanted to support me in my battle-they held a “carnival for the cure” from which all proceeds went to my family and me. Through this event, local papers and news media were contacted. My story initially appeared on a newscast and in a couple of newspapers.
Lisa: Would you have told others your story had your situation been more “typical”?
Jesica: Yes, but it wasn’t. I knew that there had to be more people like me out there searching for information and feeling helpless. Why not take what I’ve experienced and let others learn from it, both from a personal perspective and from a medical point of view.
Lisa: Can you tell me more about the process where J&J contacted, interviewed, and photographed you?
Jesica: Through a publication put out at UCCC, J&J contacted me about the CTC test. I was approached to educate people who are going through a similar experience and to get the word out about a test I found to be helpful during my treatment. I told J&J my story by phone and shared my CaringBridge page as well provided background about all I’d been through. A couple of people come out to interview me, take pictures, and shoot video, both at school while I was teaching and at home that evening. Everything was 100% accurate in both the article and video except they mentioned Boulder instead of Castle Rock in the video.
Lisa: How did you feel about including your students and your family?
Jesica: Fine; I thought it was for a good cause. Someone could learn from my story and experiences and could see what to expect if they happen to be in the same situation. I’d like to think I was a success story, which we all need to help us find motivation to fight a battle such as one with breast cancer.
Lisa: I was surprised J&J posted the two articles and videos at http://www.jnj.com/connect/caring/patient-stories/hope-against-cancer/ and http://www.investor.jnj.com/2009annualreport/medical-devices/hope.html without telling you – it seems like they should have let you know, do you agree?
Lisa: You mentioned that you did other interviews – what made you decide to?
Jesica: I felt strongly about letting others know about a blood test that was out there to help with tracking chemo throughout treatment. I knew the information wasn’t prevalent and I wanted to get it out there.
Lisa: Has it been helpful for your friends and family that you were open about the process you were going though?
Jesica: Yes, information is very powerful. I wanted my friends and family to know and understand what I was going through. People always feel helpless when others are struggling with a disease and going through treatment and they don’t always know how to help, but by being open about it, I think they felt more comfortable in being there for me instead of feeling sorry for me.
Lisa: Finally, does it help you to know that you are helping others? Does talking about it help you process your own emotions?
Jesica: Yes, to both. I’m a teacher – it’s in my blood. I’ve written journals all my life; it’s something that helps me be able to process what comes my way, to reflect and cope.
In Boston we took the availability and quality of our tap water for granted until May 1, 2010, when a major water pipe break interrupted water service to two million Greater Boston residents. Information spread quickly to citizens about the problem and what to do, all the more notable because the water main break occurred on a Saturday. In this age of consumer paranoia about withheld information, the Massachusetts Water Resources Authority (MWRA) was in front of cameras and online, communicating what they knew and what they were doing. Tufts University and the Boston Public Health Commission used communication channels ranging from Twitter to megaphones to get the word out. Their behind-the-scenes emergency planning processes, their response to this incident, and seven lessons learned from this short-lived crisis are applicable to many other crises.
The Evolution of the Tufts Emergency Alert System
Because I learned about the broken water main in a text message from Tufts University, where I teach, I spoke to Geoff Bartlett, Technical Services Manager in the Department of Public and Environmental Safety (DPES) at Tufts about the process they used to communicate about the broken water main. First he told me how Tufts Emergency Alert System started and evolved. Following the Virginia Tech massacre in 2007, DPES, University Relations, and University Information Technology invested in emergency notification system technology and developed policies for when and how it would be used. The Tufts Emergency Alert System was initially intended for life threatening emergencies after the events on the Virginia Tech campus showed the need for rapid and reliable campus-wide communication. In requesting student and employee contact information, Tufts made this clear since they thought people would be reluctant to participate if they anticipated inconsequential messages.
Tufts first used the emergency alert system to inform the campus of the status of a power outage in October 2008 because the email communication plan in place for this type of Tier 2 emergency wouldn’t work because of the lack of electricity. This initial use led to the revised policy that the emergency alert system should be used aggressively for dire emergencies but less aggressively when there is no threat to health, safety, or life. Almost exactly one year later, there was another power outage in October 2009, and short text messages were sent. While there was planning for H1N1, the emergency alert system was never used because there was no urgency to push messages. The third use was for the water main break.
How Tufts Creates Messages
While Tufts considered preparing messages in advance, it didn’t seem possible to anticipate every situation. Instead they created “Strunk and White” guidelines for crisis communication. Their three guiding principles for creating initial messages are:
- What is happening
- What you need to do now
- Where to go for more information.
Messages must be succinct because of cell phone screen size and to increase the likelihood people read them, avoid jargon and abbreviations, and be composed for easy conversion into speech. While the Tufts community is tech-savvy, they are aware that not everyone is connected all the time therefore some messaging includes spreading the word. For many emergencies, especially life-threatening ones like violent criminal incident or tornado warning, content is pre-scripted by Tufts using sources such as the Massachusetts Department of Public Health.
In the case of the water main break, Massachusetts Emergency Management Agency sent out the initial message. When Geoff received the message on Saturday, May 1, he was in a command post on campus with police, fire, and EMS personnel where they were managing the public safety aspects of the Spring Fling concert. Because there was no reported danger or health threat, email was used initially. Later in the day, after Massachusetts Governor Deval Patrick declared a state of emergency, DPES fully activated the emergency alert system. In addition, email, word of mouth, Twitter, and the web were used to spread information.
I asked Geoff if there was concern about any health issues arising from students who drank tap water. He said that there was an FAQ that included the consequences of ingesting water. However the information they were receiving from the state agencies, and therefore their focus, was on the status of the water main break and what to do, such as the boil water order. Student feedback after the crisis ended was largely positive but included that there were terms, like boil water order, that they didn’t understand.
The Boston Public Health Commission Emergency Preparedness Process
To see how a public health organization responded, I looked at the Boston Public Health Commission (BPHC) website and spoke to Susan Harrington. She had guest-lectured in my Online Consumer Health course about their use of the web and social media and I wanted to see how they deployed them in an emergency like the water main break.
BPHC and its partners participate in emergency preparedness exercises to refine their coordination and response. In 2007, BPHC worked with the postal office on a large-scale exercise and last year they responded to the real-life H1N1 epidemic. Just last month, BPHC invited businesses, health care settings, and other partner organization to a Flu Review, where they discussed how BPHC responded, including what they did well, what didn’t work, and made recommendations as they prepare for the next flu season this fall.
How the Boston Public Health Commission Alerted Residents
Susan was in a city not affected by the burst water main on the Saturday the news was announced and received a call from work alerting her to the situation. Working in concert with federal, state, and city agencies, the Mayor’s Office and BPHC relayed important information and coordinated response efforts. The immediate issue was reaching people, which the BPHC first did through Twitter, Facebook, and their website. The Mayor’s Office posted information on its own sites and used its reverse 911 phone system to alert residents. Boston police officers drove up and down streets using megaphones and loudspeakers. BPHC set up conference calls with area hospitals and staffers were sent out to food-service establishments who needed to quickly adapt their procedures for the boil water order. Throughout the weekend, the Mayor’s 24-hour hotline added staffers to help answer any questions residents had. The Mayor’s Office and BPHC also called upon their partners, which included faith-based organizations, schools, and businesses, to spread the message through their own channels, and asked residents to inform the elderly who may not have access to the web and social media. The challenge was responding quickly and reaching as many people, wired or not, as possible. These techniques had been used to spread the word about H1N1 vaccine availability.
Twitter proved very effective at relaying up-to-the-minute news. While Twitter is global, people use the #Boston hashtag and other filters to get local information including traffic updates, event listings, and even local celebrity sightings. Not long after boil water order was issued, the Twitterverse was abuzz with the news – even dubbing a new hashtag for the emergency: #aquapocolypse. The most influential – and most followed – Twitter profiles were not only pushing out timely information, but passing on questions to BPHC, allowing them to respond and dispel any myths.
Creating Fact Sheets
No matter what the crisis, some people worry and they are the ones who especially need facts. One of the main BPHC priorities was posting information and fact sheets to the BPHC website. As a homeowner Susan knew what questions she had, but she had to consider the broad demographics of Boston in terms of where people live, the languages they speak, and their access to water.
BPHC worked with the Massachusetts Department of Public Health to create easy-to-read and culturally appropriate guidelines for the boil water order for Bostonians, including translating the fact sheets into multiple languages using a professional translation company with proofing by Commission staffers. These materials were later updated to reflect the lifting of the boil water order and subsequent flushing out instructions.
I asked Susan about the extent to which they date materials. In a crisis, knowing that an update is available and when it was issued is crucial. Throughout the flu response and boil water order, they posted dates on their websites, but in a non-emergency she said it is a challenge to keep an entire website updated. Fact sheets often are dated but other online materials may not be.
Health Issues and Disease Tracking
I taught a course in Shanghai once and remembered the advice I was given about the level of bacteria being higher in the tap water than Americans are used to. I slipped back into Shanghai-mode and remembered to rinse my toothbrush with bottled water and the myriad of other pointers I had been given. I was curious if Boston residents who drank tap water during the emergency expressed health concerns. Susan said that if pathogens were in the water, people may have experienced minor gastrointestinal illness after consuming that water. A greater concern would be for residents who are immunocompromised.
The BPHC uses a sophisticated surveillance system to track diseases in Boston. (In fact, Boston has been nationally recognized for its disease tracking system.) Health care settings report diseases to BPHC, which in turn, conducts a follow-up investigation and identifies the source of the illness, such as food contamination. These disease patterns are tracked over time. In the case of the boil water order, there was no spike in gastrointestinal illnesses. Google has a less formal process of tracking disease patterns, collecting search phrases to find trends including the spread of illness. Google’s H1N1 flu trend matched up fairly well to Massachusetts’ trend lines.
Susan Harrington and Geoff Bartlett both thought the MWRA did a great job of letting people know what they knew, what they didn’t know, and what they were doing to find answers and repair the pipe. This was essential not just to inform people but to allay paranoia and fears given well-publicized situations like Toyota and Vioxx where information was not publicly disclosed in a timely fashion.
Some lessons learned about rapid health communication from the water main break are:
- Develop a rubric to assess the type of crisis as it impacts your institution. When the crisis is over, review, solicit feedback, and refine using what the military call an After Action Review.
- Identify and coordinate with partners in advance. In the case of the water main break, an impressive number of groups coordinated efforts seemingly seamlessly and, in many cases, behind the scenes. Ria Convery, Communications Director for the MWRA, told me that their response can be attributed to the 2-3 drills they perform every year “on a number of different scenarios ranging from dam failures to hurricanes to flu epidemics. Sometimes we perform a ‘tabletop’ exercise and sometimes we involve the whole universe of state agencies and run through an entire ‘event’. Every single drill, no matter the topic, provides an important opportunity for people to think through and be prepared for the worst case.”
- Prepare a communication plan for each type of crisis. While newspapers write obituaries for famous people in advance, you can’t anticipate all eventualities. However, you can prepare guidelines and immediately use them. Flexibility needs to be built in to communication plans, even to the definition of a life threatening emergency and when to select modalities that “wake you up” or more passive ones like email.
- Carefully construct messages to convey needed information succinctly. High-quality materials take time to produce because it’s important to first gather facts and then create and review accurate, appropriate, and easy-to-understand information, be they short like text and Twitter messages, or less constrained by length. Dating material is especially important in a crisis.
- Create messages that inform and allay unnecessary fears. Think like – or talk to – your target audience. Be careful about jargon, although everyone in Greater Boston quickly became conversant quickly with “MWRA” and “boil water order”, which are not in the common vernacular. Terminology was also an issue with H1N1: swine flu was the term adopted by the press initially, but it was distracting because of the association with pigs.
- Use social media, which can be both fast and local. Use emerging informal partners, who Malcolm Gladwell calls mavens, to facilitate the spread of messages in Twitter. But even when people are wired, they aren’t always online. The low tech megaphone and word of mouth works best for some.
- Use crises to educate people. While the water main break left many people with a heightened appreciation for their tap water, it was short-lived. However there may be a missed opportunity here to educate people about water sources, safety, and conservation as well as about emergency response.
While Gunther Eysenbach is famous for saying no one ever died from using the Internet for health, the “dark side” exists: the people who obsessively search for health information, the people who forgo common sense to believe there are easy ways to lose weight and miracle cures for as yet incurable diseases. Another facet is the credibility of online information; I wrote about a company that was caught and fined for fabricating patient stories in Patient Stories on Health Web Sites Can Not Always Be Trusted in both e-patients.net (heavily commented) and MedPage Today’s kevinmd.com.
Another facet of the “dark side” is when technology is the focus instead of patients. We all, as patients, need eye contact when talking to a healthcare professional. I first noticed this when my children’s pediatrician started walking into appointments with a laptop. I was acutely aware of it when a nurse asked me very personal questions without looking at me, which I wrote about in EHR Etiquette and the Importance of Eye Contact in Clinician-Patient Communication, which was published in e-patients.net/ and The Health Care Blog.
I met Dana Mahadeen, an English Language Instructor at Balqaa Applied University in Salt, Jordan with a background in e-learning. We ended up chatting, not about e-learning, but about how people in Jordan use the Internet for health information. She told me that not all Jordanians use the Internet. Internet use is 18.2% of Jordanians as of March 2008 and 24.5% as of August 2009 according to a different source. I could find no data about use of the Internet for health. Dana told me about health Web sites in Jordan and her own experiences.
While there are health Web sites in Jordan, most are government-operated although there are some private sites. Some of the English language ones Dana knows are http://www.ncd.org.jo/index.php?option=com_frontpage&Itemid=1, http://www.jfda.jo/en/default/, http://www.khcc.jo/, and http://www.moh.gov.jo/MOH/En/home.php. She said that there are other sites in Arabic, such as http://www.6abib.com/, but questioned how accurate their information is. One of the Arabic ones she uses is http://www.sehha.com/. Mostly she relies on American sites like the Mayo Clinic. Dana said that she knew about the Arabic sites because she has a friend suffering from diabetes and cancer. She tries to keep up with the news about these diseases, to understand the conditions better, and to help her friend at the same time. She went on to say that she has used these sites for herself during her pregnancy and when her children are ill.
I asked Dana why she relies on Mayo Clinic’s website instead of the Jordanian ones. She responded, “It is very user-friendly and I guess I just like the site. I have also used WebMD.” I asked if she had heard of anyone writing a blog about their illness, to which Dana responded, “I can’t say I have, but I have heard of people writing about their weight loss.” She went on to say that obesity is a problem there, not to the extent of the problem in the US. They “are seeing more 10+ year old children getting heavier and heavier and I guess we are headed the way of the US. Don’t get me wrong, most Jordanian adults are a bit on the chubby side but not obese. It is a matter of food choices: Jordanian food is naturally rich and, well, fast food is quite popular.”
I asked if heart disease was common as a result of the rich food and Dana responded, “Strange that you should ask. My husband is a Cardiac Surgeon and he is very busy” (40% of deaths in Jordan are caused by cardiovascular diseases, according to Health Minister Nayef Fayez.) To my final question about her own health seeking behavior with a husband who is a doctor, Dana said, “I am always asking my husband questions and I am always looking online. I like to know as much as I can. The Internet is a great tool.”
Stories 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.”
When you design a health Web site, the most important questions to ask are how and why someone will come to your site. To help my Online Consumer Health students answer these questions for the sites they design, they create personas and then develop scenarios that start with the persona’s trigger for going online and continue with the persona’s ongoing education and support needs.
Triggers can be related to the calendar, the news, an existing health problem, a concern about a potential health issue, or a new diagnosis or prescription. Triggers can occur because of the time of year: searches for “diet” spike on the first week of each new year and crash a week later. Bill Tancer reported on the frequency of health searches related to a diagnosis of a famous person in the news. The most common trigger is the need to learn more about one’s own or a loved one’s health issue. Susannah Fox said, “A medical crisis flips a switch in people.” With 52% of online health inquiries on behalf of someone else, a loved one’s medical crisis is often the trigger that leads to health searches.
Jill D. is a researcher from New Hampshire whose mother was diagnosed with a gastrointestinal tract tumor. Shocked and worried when she heard this, Jill wanted to immediately learn more. She needed to understand what the diagnosis meant for herself and to help her mother understand it; she also needed to help her mother evaluate treatment options. Jill doesn’t live near her mother so couldn’t go with her mother on her next doctor’s appointment. She would have felt comfortable asking her own doctor questions, but didn’t have an appointment otherwise scheduled. So she went online.
In June 2006, my (then) 74-year-old Mom was told that she had a gastrointestinal tract tumor that was probably cancerous. As soon as I heard, I wanted to find out what treatment options would likely be offered to my Mom as well as the statistical likelihood of survival.
I looked online for information because I’m not in my doctor’s office often enough to be able to ask my own physician, “Say, what do you know about tumors of the GI tract?” Also, I wanted to browse through written information at my own pace rather than trying to listen closely to a quick data dump.
I looked online over the course of several evenings. I know that the trustworthiness of information on any given website is highly dependent on the source of the information, so I concentrated on sites provided by highly reputable medical establishments such as the Mayo Clinic and the US National Institutes of Health.
By far the most useful information for my purposes was available at the National Cancer Institute. The reason I found it so helpful is because I was able to read the same article in two versions, one intended for patients and the other for medical providers. I am not a medical provider but I am used to reading dense, scientific journal articles. Thus I carefully went through a page entitled, “Gastrointestinal Carcinoid Tumors Treatment“.
I learned that these tumors tend to grow very slowly and, if the tumor is localized, the 5-year survival rate is 70 – 90%. My Mom was wondering if she would be subjected to radiation treatment but this article indicated that radiation is rarely helpful for these types of tumors so I told her that her oncologist would probably not prescribe radiation. Further, I found out that tumors smaller than 1 cm rarely spread to other areas (metastasize) but that tumors greater than 2 cm frequently metastasize; this told me that my Mom’s 1.6 cm tumor could go either way.
None of the information in the preceding paragraph was available on the page intended for patients, so I was grateful for the chance to read the pages intended for health professionals. I had to look up a few words, such as “telangeictasia” (the formal term for spider veins, one of the potential signs of GI carcinoid tumors). Despite my incomplete medical vocabulary, I felt reasonably confident that I understood the article and wouldn’t misrepresent the information when relaying it to my Mom.
This story has a happy ending because my Mom underwent surgery to successfully remove the tumor and—even better—the tumor was not at all cancerous. Six weeks after the operation my Mom was feeling healthier than she’d felt in years and went off on a long car trip.
Pam Ressler, RN, BSN, HN-BC, one of my students, and I are researching why people choose, or don’t choose, to start and maintain a blog about a health condition. We would appreciate your answers to these questions. We will publish the results of our study here as well. Please respond in a comment or email me.
If you have a blog:
When and why did you start your blog?
What do you see at the primary reason(s) you continue blogging?
How often do you typically post?
What types of feedback do you receive? How many comments do you typically get to each post?
Do you know how many unique visitors you have during a particular time period (say 2009)?
Do you do anything to promote your blog or attract new readers?
Do you use your real name in your blog?
Do you read other blogs by people with health issues and, if so, which and why?
Have you shown your blog to your doctor or other healthcare professional?
If you don’t blog:
Why didn’t you blog about your illness? Did you consider blogging about your illness?
What do you see as the primary reason(s) you didn’t blog about your illness?
If you have discussed your illness with individuals besides your healthcare team, how have you done so (phone, email, in-person support groups, discussion boards, etc.)?
Do you read other blogs by people with health issues and, if so, which and why?
If you know of someone who blogs about their health, please forward this to them or let us know how to contact the person.
Every Person Has a Right to be Healthy: An Interview with Susan Harrington from the Boston Public Health Commission
Susan Harrington, the assistant director of communications at the Boston Public Health Commission, was a guest lecturer in Online Consumer Health. From infectious disease to violence prevention and nutrition, Susan promotes the work of the Commision’s 33 program areas. Using a combination of traditional and social media, like Twitter, Facebook, and YouTube, Susan designs targeted social marketing campaigns to prevent disease and protect the health of Boston’s residents. I interviewed Susan about her recent initiatives to improve Boston’s health.
Lisa Gualtieri: During your guest lecture, you talked about some of the successful initiatives to reach teenagers with health messages. Which campaign was most successful and why?
Susan Harrington: The Boston SexED campaign. We went directly to Boston teens to ask them what was important to them. They didn’t just inform the campaign; they developed the concept, actively worked to get the word out, and helped their fellow teens answer these important questions. The Facebook conversations were lively while informative. We had a great reach in terms of the number of teens that either saw the campaign or participated in it. We continue to look at the hard data to see if there is any decrease in the number of sexually transmitted infections among teens.
Lisa Gualtieri: H1N1 is obviously on many people’s minds. What are the types of information you are providing? Can you also talk about your use of twitter to provide updates on line lengths at clinics?
Susan Harrington: We are providing everything there is to know about the flu, both seasonal and H1N1. This includes how to prevent the flu, the difference between the cold and flu, what to do if you get the flu, vaccine safety, and clinic information. As much as we are trying to get this important information out, we are always listening to what questions people may have. We develop videos and information guides to address their questions. In fact, our flu prevention campaign and video, “Talkin’ ‘bout the Flu”, is being replicated in other cities and counties nationwide for its innovative approach to the topic. In addition to traditional marketing, we used Facebook and Twitter to relay our message, garnering attention across the globe. Speaking of which, the Boston Public Health Commission is hosting a number of H1N1 flu clinics throughout the winter. We have used Twitter and Facebook to provide updates, including what people should bring, line lengths, etc. People responded back to us saying they checked online before they walked out the door, or even on their phone, so they were fully informed when they got to the clinic. They helped to retweet our posts and even posted some of their own. We love all of our Twitter followers and Facebook fans.
Lisa Gualtieri: What are the most common languages used in Boston? Why did you decide to use a translation program instead of providing translations of key information?
Susan Harrington: Boston is incredibly diverse. In addition to English, the top five spoken languages in no particular order are Spanish, Vietnamese, Chinese (Mandarin/Cantonese), Haitian Creole, and Portuguese. All of our materials go through a rigorous translation process. First, if there are funds available, any document is translated by a native speaker at a translation company. The document is then reviewed and edited by a native speaker on-staff for accuracy. (If there are no funds, then the native speaker on-staff completes the translation and is a reviewed by a second native speaker.) We tried to provide the same quality of translation at one time for our website. However, because the website changes daily, it is difficult to update the translated versions at the same fast rate. Also, we wanted to provide a larger range of languages, such as Albanian and Russian. We reviewed multiple online translation mechanisms and our on-staff translators were a key component in this process. Machine translation is never 100% accurate, but we hope to provide some translated content. However, our key information, such as fact sheets, brochures, etc., are all translated by humans. We don’t want to lose anything in translation and lose the trust of the residents we are trying to serve and protect.
Lisa Gualtieri: Have you gotten feedback on the translation services?
Susan Harrington: For the most part, the human translation is accurate and easy-to-understand. But, just as any two English speakers may use different expressions, so too with non-English speakers. For example, a Spanish-speaker from Puerto Rico may have different expressions than someone from Guatemala. We aim to use the language and expressions most common in Boston, but there are always differences.
Lisa Gualtieri: With no budget constraints, what would you do next?
Susan Harrington: Wow, what a question. In my role in communications, I have loved bringing attention to important issues, starting the difficult conversations, and hopefully improving the lives and health of my fellow Bostonians. If money were no object, I would expand the number of marketing campaigns to focus on overlooked projects and extend the great campaigns that we have had. Often times though, it’s more than about money. It’s about getting everyone involved in an issue because, even though they may not think it, they can make a difference. Every community, every person, has a right to be healthy.
Improving Patient-Physician Communication about Internet Use: Why “Don’t Ask, Don’t Tell” Doesn’t Work
I met Trisha Torrey, who writes a Patient Empowerment Blog, at the 2009 Connected Health Symposium in Boston, October 21-22. She wrote about my research in Your First Medical Opinion – Don’t Ask Don’t Tell? and included a poll. The results (you see them after you vote) show that 55% of the 40 respondents so far “don’t usually tell my doctor about my online research”. Trisha has also written about Sharing Internet Health Information With Your Doctor where she presents a collaborative approach and guidelines for sharing information with a doctor, starkly contrasting with the patient rather scathingly portrayed in When the Patient Is a Googler.
I presented about patient-provider communication at the Medicine 2.0 Conference in Toronto September 18, 2009. My extended abstract, Improving Patient-Physician Communication about Internet Use: Why “Don’t Ask, Don’t Tell” Doesn’t Work, follows:
Background: A disconnect currently exists between patients’ use of the Internet and their consultations with their physicians. Too often, patients don’t tell their physicians about their Internet use and physicians don’t ask; both suffer due to the erosion of trust and missed educational opportunities. Better patient-physician communication about Internet use is needed to help patients become truly empowered healthcare consumers.
Objectives: Too little attention is paid to improving how patients locate and use health Web sites and communicate about their use of these Web sites with their physicians. The very people who can best help patients, their medical providers, become disconnected from these so-called empowered healthcare consumers, who use the Internet instead of, before, or after consultations with their physicians without it being discussed or integrated into their care. Poor health outcomes can occur when patients have unexpressed concerns arising from the Web sites they have accessed, don’t believe their physician when a diagnosis or treatment plan differs from what they obtained from the Internet, use their doctor for a second opinion without disclosing that they obtained their first online, make poor decisions without or disregarding medical input, or scour the Internet for miracle cures.
Methods: Based on a literature review, extensive evaluations of health Web sites, and interviews with patients and physicians, better health outcomes for patients can be provided through the design of better user experiences, physician education about patient use of the Internet, patient education about effective Internet use, and the integration of Internet use into patient-physician consultations.
Results: While the designers of e-commerce Web sites focus on user experience design to create successful initial and repeat visits, designers of health Web sites often overlook the importance of the user experience. To help healthcare consumers in all aspects of locating and using online health information, health Web sites need to accommodate the range of needs and varying degrees of health literacy of site visitors. Well-established user experience design techniques can facilitate this, namely the use of personas, competitive analysis, and formative evaluation at all stages of design and development. Health Web sites can also incorporate guidelines about when and how to communicate with healthcare professionals about the information on the Web site.
Physicians need to have a better understanding of the extent to which and the reasons their patients are online before, and will likely go online after, a consultation. Currently, physicians rarely ask patients about their use of the health Web sites or any concerns that they have as a result, nor do they recommend reliable Web sites to newly diagnosed patients. Many fear the patient who arrives with a ream of printouts or who takes over a consultation. But worse than that is when patients have unexpressed fears or distrust their diagnoses because of what they accessed online. Physician training about how and when to ask patients can be aided by adding questions about Web sites used and any concerns to the form patients fill out in the waiting room, and physicians can receive guidance about reliable Web sites to recommend to their patients.
When patients go online, they often start at a search engine and rarely determine the source or date of the information they are using. Better patient education is needed on how to discern credible Web sites and health information on the Internet, a skill that is becoming even more important with the wealth of user-generated content, the many erroneous or misleading Web sites that compete for their attention in searches, and the immediacy of access possible from Internet-enabled mobile devices. Furthermore, patients need guidance about how to discuss their Internet use with their physician appropriately, without taking over the consultation or providing conclusions to a physician who is probing for symptoms. Finally, patients need to seek recommendations for Web sites to use when they leave a consultation with unanswered questions.
Conclusions: Patient use of the Internet disconnected from physician care can be detrimental. The benefits of Internet use can accrue with better design, education, and communication. More effective health Web site use can occur through improved design practices, physician and patient education, and patient-physician communication integrating patient Internet use. Better communication can be facilitated by questions on patient forms and guidelines on health Web sites. The next step is testing these hypotheses. The expected outcome is better informed patients whose Internet use is integrated into, rather than disconnected from, their medical care.
Much like love and religion, health literacy is a topic that many people have a revelation about. It is not explicitly taught in school (unless you study Health Communication or a related topic); instead people have personal experiences that lead them to learn about health literacy and recognize its importance in all aspects of healthcare.
My health literacy revelation came while I was a patient advocate for a Cambodian refugee who had cancer. I won’t go into the details of his health condition; just that I took him and his wife to his doctor’s appointments. During the appointments, I encouraged him to talk about his symptoms and medication side effects and asked about test results and treatment options until I understood them. I always made sure the couple were following and checked to see if they had questions.
There are many aspects of patient advocacy I could expand upon, but what struck me the most was how the couple would ask me on the drive home and even weeks later to repeat what the doctor had said. This was information that I retained but they did not. As I started to read about this, I discovered that studies had been done on the emotional impact of disease and how comprehension and retention were impacted.
While language and culture may had been factors, I believe fear had a stronger impact on this couple’s health literacy skills. Now, when I teach, I include health literacy, especially for its role in the design and evaluation of health Web sites. When someone goes to a health Web site, poor health literacy skills can influence the search terms used, the Web sites selected, and how information is used.
Seven years ago, at the age of forty-six, I developed chest pains, strong enough to make me sit on the floor. With three young children asleep upstairs, I was immediately worried about whether they would grow up fatherless. I entered my symptoms into WebMD and learned enough to know I needed to call 911. Five hours later I was released from the ER – no heart attack. Since no one suggested otherwise, I left the hospital and quickly went about living life as though the entire process was nothing more than an overactive imagination.
Six months, many drinks and cigarettes later, and after chopping wood for several hours, I had difficulty breathing during an episode of the Sopranos. The first ride in the ambulance was expensive, and I didn’t want to waste the money for another Chicken Little “The sky is falling” moment of panic.
This time I did not even bother to look up my symptoms. What to do? I went outside and had a cigarette. Embarrassed by my prior “misdiagnosis”, I was reluctant to tell anyone about the fact that I felt like I was breathing through a straw pockmarked with holes. My wife called 911 when I collapsed at her feet.
This time there was no mistake. I’d had a heart attack – been there, done that, got the stent. What we learned was that I’m someone whose enzyme markers don’t appear until after about six hours, my episode earlier that year may have also been an attack, and my interpretation of the symptoms I read on WebMD may have been right. I also learned a few years later via NPR that depression often follows a heart attack and stays with you. It’s a relief to have stumbled across that information, something I wish I’d learned at the time.
What I also figured out on my own through common sense, research, exercise, and changes in lifestyle, and what was subsequently patiently and repeatedly reinforced by a brilliant and kind cardiologist at Penn is that it’s never a good idea to take twenty-five years off between workouts. I also learned that I have and will continue to have heart disease and need to treat it as such. Instead of smoking and drinking, I now run about five miles a day, watch what I eat and when I eat, and am constantly trying to find relevant literature. My doctor tells me I have become his poster child for how to proactively manage heart disease. My guess is that I can outrun and out lift most thirty-year-olds. While there’s no guarantee that I will live longer as the result of my lifestyle changes, I will live better. (P.R., personal correspondence, August 29, 2009.)
WebMD.com is often listed as the most popular health Web site. I find their design is too busy and their content varies considerably in quality. Every time I look at WebMD for a specific purpose, I am distracted by the ads, such as a video advertisement playing next to the text I am reading – how distracting is that? Sometimes I am there for a specific purpose and find myself clicking on the slide show or provocatively-titled articles – did someone say stickiness?
Some of their content deserves an “A”. In an analysis, their Swine Flu Guide was superior to the CDC’s and other sites at providing answers to the questions likely to be on healthcare consumer’s minds.
Other content is less impressive. The most recent article that I read when I was at WebMD for a different purpose was the irresistibly-titled guide to never feeling tired again. I was surprised that the guide, subtitled “22 ways to tackle life’s biggest energy zappers”, was from Redbook Magazine since I thought WebMD wrote their own content. The first page of the four-page article was about how to “Energize Your Diet”. It recommended that I eat breakfast to feel perkier, stay hydrated, etc. While I questioned is I wanted to feel perkier, most of the advice seemed reasonable.
I had just finished teaching a course and asked one my students, Alicia Romano, a master’s candidate in the Friedman Nutrition School at Tufts University School of Medicine and a Dietetic Intern at the Frances Stern Nutrition Center, for her opinion on the article. She responded,
As far as the nutrition related pieces are concerned (generally the first page of the article) the information is pretty accurate in terms of increasing your energy throughout the day (keeping your blood sugars stable and staying hydrated). I haven’t read much related to the omega-3′s and increasing your energy, so that was interesting. As far as the other information was concerned, it sounded a little “fluffy” to me, to be honest. I think all of the tips are good, but overall, I think getting enough sleep, staying hydrated, exercising, and eating healthy and frequently throughout the day are the major keys to energy. I was not too happy to see that they reviewed some of the new “products” at the end. I have never even heard of half of those, and I’m sure most readers haven’t either. If anything they are going to be informing readers of these products that they shouldn’t even try. Their reviews weren’t on the efficacy either, just a simple quotation. I think the title is a little deceiving as well, but then again, it is from a magazine (Redbook). I was actually surprised to see they would post a magazine article on WebMD (Personal correspondence, A.R, August 11, 2009).
I appreciate Alicia’s assessment and, based on her analysis and mine, I give the article a “C”. Some good suggestions but only a few references, no links, an introduction with only the merest hint of the content, and no conclusions or resources for further exploration. While WebMD provides many mechanisms to share an article, there are none to comment on or rate the accuracy or usefulness of an article so neither Alicia or I could post our feedback. I looked for the original Redbook article and found that while it seemed essentially the same, although split onto more pages, the links to useful sites such as the American Dietetic Association (ADA) were removed in the WebMD version. Can I lower the “C” to a “C-”?
My friend Jan, a breast cancer survivor, told me about her use of complementary and alternative medicine (CAM) Web sites and how she has developed a “wackiness filter” to determine which to pursue beyond an initial glance. Interested in learning if wackiness filters are common, I posted a question in twitter about what are the attributes of a Web site that makes you convinced it is “wacky” and what are the warning signals to you? I further asked if this was more of an issue with CAM.
I heard from S.R., who said, “I am in good health and have never had any health challenges. So, I am not sure how useful my strategy is. It’s all talk until then, no?” She looks for “wellness as opposed to disease.” Two of her strategies are reading books before going online and using the resources provided by graduate programs in CAM.
I am fairly receptive to alternative therapies. Being half (East) Indian helps me appreciate them more easily perhaps. But I have a strong Western bias for controlled studies and scientific evidence.
Favourite med resource is internet, but it is just one of the tools. I use my GP to confirm or point me in another direction. Hardly ever rely on her exclusively any more (she is overworked). I also have an old CPS (drug directory) — paper copy. I ask all my friends for their experiences, especially a friend of mine who is a Buddhist and extraordinarily accepting.
I don’t have the skill to understand random control studies; but tend to be cynical b/c of how they are funded. This means I tend to rely on people who interpret them for me like T. Colin Campbell (author of China Study). He is an especially good source because he too tries to integrate east and west, with a western sensibility.
Strategy is always to rely on corroboration – triangulation, isn’t that what researcher’s call it?
If a pharmaceutical company funds a resource, I am ten times more skeptical, with good reason.
For alternative therapies, I tend to read books first, then go to the web from there. Maybe the slower reading, and complete thoughts help me understand where I would be hesitant online. Alternative medicine does not spring from nowhere, and it is not difficult to figure out who is flaky and who speaks with authority borne from wisdom (unlike western medicine, imho). I often email authors; I love living in a world where this is possible.
I have looked at graduate programs in alternative medicine. They understand the western mind and what it takes to reassure (if only to get funding!). I have followed their resource links in the past, and liked what I found.
I never use Google to search for symptoms. The results are a mess.
My undergrad degree is in Biochemistry, and I am in the health care industry. So I am not uncomfortable with the lingo.
I try to pay a lot of attention to my pain signals from my body. I am not great at this, but I’m learning. (Personal correspondence, S.R., May 10, 2009)
In How useful are online health quizzes? Consumer Reports Health.org, June 2009, I say, “My biggest objection to [quizzes] is how they can be misused.” I go on to say that “Many people who take such quizzes do not necessarily know how to put the test and results in perspective.” Of course they can be fun too, but many are dealing with serious issues in a frivolous way and are not effective screening tools.
Have you ever taken one and with what result?
I almost didn’t recognize Paul S. when I saw him with no hair looking rather gaunt. He told me about his cancer and about his experiences with treatment, which included side effects during chemotherapy of potentially permanent hearing loss and numbness in his hands and feet. Paul felt like he had to do his own research because he was not “getting satisfactory answers from my treatment provider”. Here is his story:
I was diagnosed with a germ cell tumor and endured nine weeks of chemotherapy. I was advised of the side effects of the three chemo drugs in a very routine way, emphasizing the nausea, but not dwelling on the other effects, and not really mentioning that some side effects could be permanent.
One of the three drugs was Cisplatin (cisplatinum), a complex compound that includes platinum. During the first round of chemo, I experienced a high-frequency hearing loss. While I could still function in terms of hearing and speaking to other people, I was very aware of the loss in listening to music and even the normal background of everyday sounds – sounds were not as crisp as they had been.
I consulted my oncologists, one of whom said that this was a known side effect of Cicplatin, and that most people recovered their hearing when the drug therapy ended. I asked what he meant by “most”. He replied, “About 70 percent.” Now 70 percent may be “most” to him, but it sure isn’t to me.
From the beginning of my illness, I had started broadcasting news of my illness and treatment via e-mail to interested friends – an opt-in list after the first broadcast. One of the friends replied to my news of hearing loss with research and experience that his mother had acquired in dealing with a similar issue. This spurred me to do some investigation of my own, and it wasn’t hard to find lots of information on Cisplatin with a simple Google search.
What I learned is that Cicplatinhas been used for chemotherapy treatment for several decades, that the hearing loss side effect has been well known for most of that time, and that somewhat extensive research has been done on the nature of the effect and on ways to protect the body from the side effect while still getting tumor-reducing effects from the drug. The drug continues to be used because it has proven highly effective in killing tumor cells with otherwise not-too-awful side effects.
The bottom line is that there is no known way to avoid the hearing loss while still getting the tumor-reducing effect. The hearing loss effect *is* dose-dependent. Armed with this information, I insisted what my oncologist reduce the dose of this drug, and after discussion of the tradoffs, we reduced the dose by 15% for the second and third cycles of chemotherapy.
My hearing recovered somewhat toward the end of the first cycle. Each cycle consisted of five days of Cisplatin and two other drugs, followed by two weeks of one-day-per-week of just one of the drugs (not Cisplatin). So I got Cicplatin for five days, then was off of it for two weeks – one cycle. The loss was somewhat less during the second cycle, but also less recovery, and similarly for the third cycle.
At this point I have what is considered to be a permanent high-frequency hearing loss, accompanied (as expected) by mild ringing (tinitus). It apparently is the price I must pay for being cured of my tumor. I am angry about the loss, but have no target for my anger.
Chemo ended in mid April. During treatment I went through a spell of peripheral neuropathy- numbness in my hands and feet, another known side effect of Cicplatin. The numbness lessened over time, and shortly after chemo ended, I had some residual numbness in my feet but none in my hands. However, in the last two weeks, the numbness has worsened in my feet and has returned to my hands. My oncologist is at a loss to explain why the neuropathy should suddenly worsen weeks after I stopped receiving the drug that supposedly caused it. So I will be continuing my own research since I am not (so far) getting satisfactory answers from my treatment provider.
That’s the story so far. My tumor has gotten substantially smaller, almost to the vanishing point (according to PET scans), but I am not yet officially in remission. The numbness is not painful, but is quite annoying, and it’s worrisome because it shouldn’t be getting worse now. (P.S., private correspondence, 7/31/08).
Paul S. is doing well. As an update he said:
My health is good now. As of the last CT scan in January, there was nothing left of the tumor but scar tissue. I have another scan a week from now as a precaution.
My hearing may have improved slightly – the tinnitus is less, and I don’t get the distortion with loud sounds that I was getting. As for frequency response, well, at my age, there is going to be some high-frequency loss anyway. I know there is still a reduction in high frequencies, but I can’t say for sure at this point whether it is age or chemo. (P.S., private correspondence, 7/6/09).
I told Paul I hope he wasn’t offended that I called him gaunt and he said, “I’m sure I did look ‘gaunt’ when you saw me then – I certainly FELT gaunt.” One so often struggles with what is the right thing to say or how to hide the surprise, or even shock, one feels when seeing someone who looks very different than the last time you saw him or her.
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 was interviewed on the radio show, Something You Should Know, about how patients use the Internet for health and what are some of the drawbacks. You can listen or read the transcript. I was also interviewed for an article in Elle Canada about Cyberchondria.
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.
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.
The 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.
It is natural to turn to Google for health concerns if you are already using it for just about everything else. But the consequences of using poor quality or misleading information are much greater than, say, choosing a movie to watch. I wrote about using the Internet for diagnosing an illness in the Lexington Minuteman, which also appeared in many other, mostly small town, newspapers. My primary goal is to help people improve their health literacy.
I had the pleasure to talk today to Mary Morgan, who is the widow of Dr. Benjamin Spock. She founded the Dr. Spock Company, which built drspock.com after his death. She told me that during “the dot com rage” she was approached by many people to do a Pediatric site which would emphasis child development and include a new section on OB/GYN. Ms. Morgan’s primary impetus was to provide a tool to help parents raise their children in conjunction with the newly revised Dr. Spock’s Baby and Child Care. The site offers an order of magnitude more information than the book, with different ways of delivery, including experts on child development, a feature that is not common on Pediatric sites.
Ms. Morgan is interested in building a new and updated Pediatric site in conjunction with these medical experts. Her goal is to have a site that is easier to revise and update and has the “oomph it needs”. She will be guest lecturing to my Online Health Communities class and, as one of their class projects, they will work on the design of the new site.
If you use the book or the site, what online features could help you be a better or more knowledgeable parent?
In Here Comes Everybody: The Power of Organizing Without Organizations, Clay Shirky discusses why some social networks stick while others collapse. Wikipedia is one of his examples of a success. When I looked at Qwitter, my first reaction was it was a failure because there were only 614 people using it. Qwitter, a cleverly-named initiative from TobaccoFreeFlorida that harnesses Twitter, is promoted as “a social tool designed to help you quit smoking” through keeping track of daily cigarettes and feelings about smoking. They also provide tips. That 614 people signed up for Qwitter seems low given that 750 people sign up for Twitter daily and 3 million people use it.
My initial reaction was reinforced by looking at how Qwitter was used, since many of the users had started in April (due to launch publicity, I speculated) and had stopped using it after a few – or just one – use. This is notable given that many Twitter users tweet many times daily. Looking through Qwitter users, I finally found a recent and more sustained user who tweeted pretty regularly for the past month, although there didn’t seem to be any cessation taking place.
My Qwitter perusal indicates that most users do not stop smoking. However, there is no indication who the 614 people are – people who are trying yet another approach to quit smoking or people who were lured by an innovative technological approach and go on to try another. If even a small number of people stop smoking because of Qwitter, it may well be considered a success, especially since the cost of creating it should have been low since it was built on Twitter which is free.
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.
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.
I 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?
Sen. Ted Kennedy was diagnosed this week with a malignant tumor. I bet he is not online looking for answers right now. Why? Because the answers have been provided by some of the world’s experts. In fact, they are there for everyone to read in the Boston Globe and other newspapers, complete with graphics.
Some say health is the great equalizer. (Others call education, the internet, – you name it – the great equalizer.) Many studies have examined health disparities and looked at the impact of health insurance, ethnicity, gender, and other factors on the quality of health and health care.
Health disparities aside, anyone can become ill. Everyone’s hearts go out to Sen. Kennedy and his family at his diagnosis. But many people, given a devastating diagnosis – or even a minor one – turn to the internet for help.
Before the internet, people relied primarily on their doctors. Now they rely on their doctors and the internet. But do people use the internet because they want to or because they have to?
Most people do not have world-renowned experts chiming in on the best course of treatment. Even the graphics – I can only remember one time that a doctor drew a sketch for me.
My friend Maureen emailed me:
I certainly have used the internet for health information. Usually what I find scares the daylights out of me! Or it’s too general and simplistic- until I find the right sites. Since I’m such a worrier I always need to be careful in that regard because it can be addictive- just one more search!
Maureen, a physician’s daughter, uses the internet for herself and her family, as do many others, obsessively searching for answers. People like Maureen and me use the internet because we are not rich or famous enough to have teams of experts to treat us. Ultimately, no one wants to be ill and, if they are, they want the best expertise available.
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.
Hongtu Chen and I, with some inspiration from Larry Prusack, just finished a journal paper on The Impact of the Democratization of Health Information on Elders. Here is the abstract:
Thanks to the Internet, elders have access to an unprecedented amount of health information about diseases and medications. Much of this is information previously only available to medical professionals. The ease of locating – or the democratization of – health information has benefits and drawbacks. The benefits to elders are the ability to learn about all aspects of health whenever they choose. The drawbacks are that, due to lack of medical training and poor health literacy, they may not be able to effectively discern the quality of, comprehend, and use what they find online, and, worse, may rely on what they find online instead of seeking professional medical care.