Posts filed under ‘online health communities’

End of Life Decision Making

End-of-life decision-making is an increasing pervasive topic that has personal, political, legal, and, of course, medical implications. George Lundberg, MD said that “every American deserves the right to choose to have a death with dignity and as pain-free as medical science and practice can provide. To achieve that, patients and physicians must discuss the options for managing an upcoming death.” Atul Gawande, MD wrote in Letting Go: What should medicine do when it can’t save your life?, “But rarely is there nothing more that doctors can do. They can give toxic drugs of unknown efficacy, operate to try to remove part of the tumor, put in a feeding tube if a person can’t eat: there’s always something. We want these choices. We don’t want anyone—certainly not bureaucrats or the marketplace—to limit them. But that doesn’t mean we are eager to make the choices ourselves. Instead, most often, we make no choice at all. We fall back on the default, and the default is: Do Something. Is there any way out of this?” Gawande told about La Crosse, Wisconsin, where, by 1996, 85% of residents who died had written advanced directives.

La Crosse is the exception. Rational, informed decision-making is difficult; most people don’t know much about advance directives and don’t have good resources to learn about the many facets of end-of-life decision-making. Enter Mardi Coleman, a Master of Science candidate in Health Communication at Tufts University School of Medicine. With a background in geriatric mental health and an interest in how healthcare can meet the Institute of Medicine’s aims for a system that is efficient, equitable, effective, timely, patient-centered, and safe, she designed a end-of-life decision-making website in Online Consumer Health. The overarching goal of the website, as described in her final paper, is “to provide information that allows users to make informed end of life legal, medical treatment, and service decisions,” specifically to:

Help users clarify their understanding of their beliefs and values regarding end of life, treatments, and services, including that beliefs and values are situational and change over time.

Provide the types of information users need or want regarding advance directives, life-sustaining treatments, and services that extend or support the end of life in order to make informed decisions.

Engage first-time users and invite reuse because the website is attractive, well laid-out, and easy to use, and contains information that is relevant across many stages of decision-making.

February 28, 2011 at 9:44 pm 5 comments

Safe Fish, Smart Baby: Fish Consumption Advice for Pregnant Women

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.

January 9, 2011 at 1:58 am 2 comments

A Website for the Management of Narcolepsy

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

December 28, 2010 at 11:19 pm 1 comment

Better Health Websites through Better Design: Insights from Tania Schlatter

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.

September 25, 2010 at 11:04 pm 6 comments

Sukar Ala Sukar- A Website Design for Diabetes Education and Support for Saudi Arabian and Middle Eastern Children

Sukar Ala Sukar is a website for 4th and 5th grade Saudi Arabian and Middle Eastern children to learn about diabetes. Nada Farhat, MD, designed this in my fall course, Online Consumer Health, and she and I revised her project to submit to the 2010 DiabetesMine™ Design Challenge, a competition “to encourage creative new tools for improving life with diabetes”, in the hopes that we would get funding to implement and evaluate the site.

Here is our description: We designed a website to meet the education and support needs of children with diabetes, at risk, or with diabetic family members who live in Saudi Arabia and other Middle Eastern countries or whose families are from these countries. Culture and language (English and Arabic) are embedded in the website design which includes separate areas for girls and boys in keeping with societal norms. The website goals are to increase awareness of diabetes and debunk myths children might have, which are carried out though text, video, games, recipes, and activities. Social media further reinforces education and provides peer support. Our goal is to develop and evaluate the effectiveness of the website with Saudi children in the US and in Saudi Arabia.

To me, this project is fascinating in three ways: the impact of culture on effective design; design of a bilingual site when one language is read left-to-right and the other right-to-left; and how health website design for children is different than for adults. Nada’s final paper for the course addresses many of these through her competitive analysis and research. Our initial answers to the culture question are in the entry. For instance, one way to address cultural norms is to separate the site by gender. Another is to use drawings of people since photographs of girls violate cultural norms. We know that bilingual design can be challenging for languages that are more similar than English and Arabic, such as English and Spanish, especially when one language uses more characters than the other to express the same thing. We also know the importance of localization. And for children’s design we want to be consistent with best practices yet be fresh.

We welcome your feedback.

May 6, 2010 at 8:30 am 1 comment

Online Consumer Health in Jordan: An Interview with Dana Mahadeen

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.”

February 16, 2010 at 9:38 am 4 comments

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

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

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

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

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

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

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

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

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

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

February 14, 2010 at 1:01 am 12 comments

Blogging for Health: Survey about Why People Blog about an Illness

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.

January 23, 2010 at 8:50 am 29 comments

Every Person Has a Right to be Healthy: An Interview with Susan Harrington from the Boston Public Health Commission

Susan Harrington, the assistant director of communications at the Boston Public Health Commission, was a guest lecturer in Online Consumer Health. From infectious disease to violence prevention and nutrition, Susan promotes the work of the Commision’s 33 program areas. Using a combination of traditional and social media, like Twitter, Facebook, and YouTube, Susan designs targeted social marketing campaigns to prevent disease and protect the health of Boston’s residents. I interviewed Susan about her recent initiatives to improve Boston’s health.

Lisa Gualtieri: During your guest lecture, you talked about some of the successful initiatives to reach teenagers with health messages. Which campaign was most successful and why?

Susan Harrington: The Boston SexED campaign. We went directly to Boston teens to ask them what was important to them. They didn’t just inform the campaign; they developed the concept, actively worked to get the word out, and helped their fellow teens answer these important questions. The Facebook conversations were lively while informative. We had a great reach in terms of the number of teens that either saw the campaign or participated in it. We continue to look at the hard data to see if there is any decrease in the number of sexually transmitted infections among teens.

Lisa Gualtieri: H1N1 is obviously on many people’s minds. What are the types of information you are providing? Can you also talk about your use of twitter to provide updates on line lengths at clinics?

Susan Harrington: We are providing everything there is to know about the flu, both seasonal and H1N1. This includes how to prevent the flu, the difference between the cold and flu, what to do if you get the flu, vaccine safety, and clinic information. As much as we are trying to get this important information out, we are always listening to what questions people may have. We develop videos and information guides to address their questions. In fact, our flu prevention campaign and video, “Talkin’ ‘bout the Flu”, is being replicated in other cities and counties nationwide for its innovative approach to the topic. In addition to traditional marketing, we used Facebook and Twitter to relay our message, garnering attention across the globe. Speaking of which, the Boston Public Health Commission is hosting a number of H1N1 flu clinics throughout the winter. We have used Twitter and Facebook to provide updates, including what people should bring, line lengths, etc. People responded back to us saying they checked online before they walked out the door, or even on their phone, so they were fully informed when they got to the clinic. They helped to retweet our posts and even posted some of their own. We love all of our Twitter followers and Facebook fans.

Lisa Gualtieri: What are the most common languages used in Boston? Why did you decide to use a translation program instead of providing translations of key information?

Susan Harrington: Boston is incredibly diverse. In addition to English, the top five spoken languages in no particular order are Spanish, Vietnamese, Chinese (Mandarin/Cantonese), Haitian Creole, and Portuguese. All of our materials go through a rigorous translation process. First, if there are funds available, any document is translated by a native speaker at a translation company. The document is then reviewed and edited by a native speaker on-staff for accuracy. (If there are no funds, then the native speaker on-staff completes the translation and is a reviewed by a second native speaker.) We tried to provide the same quality of translation at one time for our website. However, because the website changes daily, it is difficult to update the translated versions at the same fast rate. Also, we wanted to provide a larger range of languages, such as Albanian and Russian. We reviewed multiple online translation mechanisms and our on-staff translators were a key component in this process. Machine translation is never 100% accurate, but we hope to provide some translated content. However, our key information, such as fact sheets, brochures, etc., are all translated by humans. We don’t want to lose anything in translation and lose the trust of the residents we are trying to serve and protect.

Lisa Gualtieri: Have you gotten feedback on the translation services?

Susan Harrington: For the most part, the human translation is accurate and easy-to-understand. But, just as any two English speakers may use different expressions, so too with non-English speakers. For example, a Spanish-speaker from Puerto Rico may have different expressions than someone from Guatemala. We aim to use the language and expressions most common in Boston, but there are always differences.

Lisa Gualtieri: With no budget constraints, what would you do next?

Susan Harrington: Wow, what a question. In my role in communications, I have loved bringing attention to important issues, starting the difficult conversations, and hopefully improving the lives and health of my fellow Bostonians. If money were no object, I would expand the number of marketing campaigns to focus on overlooked projects and extend the great campaigns that we have had. Often times though, it’s more than about money. It’s about getting everyone involved in an issue because, even though they may not think it, they can make a difference. Every community, every person, has a right to be healthy.

January 14, 2010 at 4:37 am 5 comments

Is There Time to Use the Internet Before Going to the ER?

Bruce Auerbach, MD, past president of the Massachusetts Medical Society, told me that, as an emergency room physician, most of his patients don’t have time to use the Internet before seeing him. In an emergency, many people only want to get to the hospital. But some use the Internet to look up symptoms to determine if an ER visit is warranted, and cost can be a factor in making a decision about calling an ambulance. Paul R. told me about how he looked up his symptoms online when he thought he was having a heart attack.

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.)

September 14, 2009 at 6:54 am Leave a comment

What’s the Right Thing to Say to Someone Who Is Ill?

When I ran into Paul S. not knowing he had cancer, I barely recognized him and struggled with what to say. “What happened?” didn’t seem appropriate, although it was my initial reaction. I believe I said, “I barely recognized you,” which was true. I’ve been in many situations where I wasn’t sure what to say to someone who was ill or in distress; I wanted to be supportive but wasn’t sure what would be perceived as helpful.

I’ve been on the receiving end too; most recently when my father died and I remembering saying to myself many times, “I know he/she means well” when their words did not comfort me. I only once curtailed a conversation, when, within minutes after hearing about his death, a friend started telling me a long, involved story about a mutual friend’s father. I stopped her, said that I knew she meant to be supportive but I could not listen right now, and walked away.

People so often mean well but don’t know what to say. I asked Paul S. what he found helpful and he thought it was very dependent on personality. He describes himself as “a very logical, rational, controlled-emotions kind of person, so I hear comments such as you made as empathetic or at worst neutral. ‘Wow, Paul, you look like crap!’ ‘Darn right – I feel like crap.’ I actually like that.  But I have known other people who are really bothered by exactly that type of observation. They want sympathy and understanding, but not observation, if you get my distinction. A worried LOOK, and an inquiry about how they are feeling, seems to be what they need. Which I value too. So I guess that’s the safe thing to do.”

When I told Paul about my experience with the friend who I walked away from, he understood my reaction and said, “What I did not want to hear is what you heard: somebody else’s story, not really relevant, and depressing. That’s indicative of a person who isn’t able to listen.” Of course, I was the one who was actually there and don’t think that the person couldn’t listen, but didn’t know what to say and felt moved to say something. The opportunities for mismatch between what one person says and the other person needs are abundant!

The difficulties are compounded by the distinction between advice and information, as Paul articulated, “The other thing I did not want to hear is advice about what I should do or not do – I’m getting the best care available, and I’m pretty competent to take care of myself. But then unsolicited advice is almost never welcome, right? What I DID appreciate, however, was INFORMATION. I didn’t include this in my story, but when I shared my situation with a friend at church, he reported that his mother had experienced something similar and had done extensive research on the web regarding Cisplatin and hearing loss. At my request, he contacted his mother who then e-mailed me several specific web links to good information sites. THAT interaction spurred me to do more research than I had done before.”

When I ran into Paul, my immediate thought was not to offer meals or rides, but sometimes this is the most helpful thing one can say. Paul agrees,”The other thing that was nice, though I didn’t really need it, was offers of help, such as rides to chemo or offers to bring food or visit. I think it’s my personal style to not want or need much of that – I was able to drive the whole time, and didn’t want to put somebody to a lot of trouble; my taste buds and my appetite were shot, plus my partner was taking care of my food needs; and I just wanted to be left alone to vegetate in front of the TV when I felt bad, and not feel like I needed to keep up a conversation or be nice. But I’ve known other people – my (now former) partner is one – who in a similar situation would want almost around-theclock company and help. So it’s good to ask and offer help, as long as you’re prepared to accept ‘thanks, but no thanks’.”

While Paul doesn’t think he is typical, it may be that no one really is in times of need. Which, of course, helps one to appreciate the people who do say or offer exactly what you need at that moment.
Paul also deal with the the common problem of how to keep people informed through email, which is a way of reaching out to people as well and a way of avoiding having the same conversation repeatedly. Paul recounted his experience, “On a closely related topic, something I did that had a surprising and wonderful result: When I entered the hospital, I did a broadcast e-mail to a ton of friends, advising them of the immediate situation and inviting them to opt in to periodic e-mail updates. More than 60 people opted in! Sending those broadcasts helped me feel connected, and I often got lots of replies. But the most surprising thing that kept happening was that they THANKED me for keeping them posted. That blew me away. It still does a year later. True friends WANT to know, want to share the burden. Too many people feel ashamed or embarrassed or unimportant, and they miss this incredible opportunity to strengthen relationships by sharing their situations. Sure, there are folks who complain too much, so it can go the wrong way. My messages were factual and hopeful, even when I felt like crap, and that seemed to inspire a lot of people, which in turn made me feel that something good was coming out of this not-so-good time. I don’t know whether this fits into what you’re trying to do, but I would sure encourage people who find themselves in similar situations to reach out and stay in touch.” There are Web sites for exactly this purpose, but email is certainly simple and, in this case, effective. There are also many people who blog their illness; one of the most moving that I read was NPR journalist Leroy Siever’s My Cancer.

July 7, 2009 at 9:19 pm 3 comments

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

When I told Avi, an editor in Dallas, about my health research, he responded, “It’s coincidental that I had an Internet health moment this week.” Avi had switched to a generic SSRI anti-depressant from a name-brand and was feeling poorly.

The Web sites Avi used were the FDA, a mental-health news clearinghouse/portal, and, a respected online forum for patients using anti-depressants. He went on to say that this “online research showed a high probability that the nasty symptoms I’ve experienced the last couple of weeks are due to my switching from a name-brand drug to a generic version.”

Avi continued, “With the Web information in hand, I talked to my doc and the pharmacist, went back to my old med, and, today, I’m feeling much, much better. Did I need the Web for this? Not necessarily; a phone call to my doc may have done the same thing. What the Web did was immediately confirm the strong probability between the generic med and my symptoms, which allowed me to start the chain of events necessary to fix the problem.”
 
I asked Avi why he turned to the Web first. He said, “It’s a convenient, fast filter/information source, and I trust my Web-research skills. Moreover, I didn’t stop after doing my surfing; it was just a first pass at the information available before I called my doc, to whom I didn’t say, ‘Hey, all these blokes out on the Web are going through hell with this generic, get me off of this stuff!’ Rather, I first had a discussion with my pharmacist to find out if she had had similar feedback from her patients on the same drug. Then, with information from three serious, medically respected Web sites and my pharmacist’s comments in hand, I called my doc and simply asked him if there could be a causal link between my switch to the generic and my symptoms. If he had said no, I would have cited the evidence I had in hand that appeared to suggest a link. But, he didn’t, so I didn’t have to go beyond the initial question.”

Avi concluded, “So, there’s my story. Not very dramatic.” But it exemplifies both the empowered healthcare consumer who trusted his information literacy skills, and also the lack of disclosure about the use of the Internet that so frequently occurs between patients and doctors. (A.G., private correspondence, 8/5/08 and 8/6/08).

June 28, 2009 at 10:57 pm 2 comments

Finding Useful H1N1 Information Online

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

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

June 9, 2009 at 9:43 pm 4 comments

The Pitfalls of Getting Medical Information on the Internet

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.

May 29, 2009 at 3:36 am Leave a comment

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

I wrote the cover story of Tufts Medicine, Winter 2009, with Dr. Janey Pratt, a surgeon at Mass. General Hospital. The article looks at patient use of the Internet from the physician perspective. The article concludes:

Online resources can help your patients become better educated about medical topics, more confident and comfortable with you and more compliant with treatment. As Anthony Schlaff, director of the M.P.H. program at [Tufts University School of Medicine], notes, “At its best, the Internet is one more tool in the partnership between a physician and patient.” [Bruce] Auerbach, the Massachusetts Medical Society president, couldn’t agree more. “Given that patients are going online,” he says, “the best thing to do is engage them as partners in care.”

The full article can be read at Dr. Google: Your Patients, the Internet, and You.

February 26, 2009 at 7:30 am 2 comments

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

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

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

I appreciate any feedback, insights, or experiences.

February 16, 2009 at 1:27 am 15 comments

Health Stories: Successful Weight Loss Aided by Online Tools

WeightWatchers.com is an example of a thriving, well-segmented online health community. The segmentation has been applied to their success stories as well, making it easy to locate stories that are likely to resonate. With both the discussion forums and stories, segmentation works because of the number of contributions. WeightWatchers.com also seemingly does what many consumer websites have failed at: charges for parts of the website. They employ a tiered approach to registration and payment: most of the site is available to someone who is browsing; contributing requires registration; and using their online tools requires paying fees. While I have used the website often as an example in my classes, I had never tried the online tools and was interested when I met someone who had not only used them, but successfully lost weight.

When I joined Weight Watchers in May of 2007, I was really pleased that they were offering a promotional rate of $39 per month for unlimited meeting attendance as well as unlimited use of their “member website” which definitely has more to offer than their “free site” for lifetime members.  I had tried to lose weight earlier in the year by logging on to “Spark People” which I believe is supported by a government agency.  I just didn’t find it gave me the format that I needed even though it has some of the same features as weight watchers like keeping a journal of what you eat.

The pay site for weight watchers reinforced the simple ideas of weight watchers and I just put my faith in the “flex program” of counting points.  If I couldn’t make it to a in person meeting on a given week, I found a lot of the same principles reinforced on the website, and all I seemed to need was a “weekly mantra” to keep me on track for the week.  The pay site also has a place where you can chart your progress, and weeks that I would go to a meeting I would “log in” my current weight, and it felt great to have the little chart appear and show my weight going down.  Another thing that I found really useful on the pay website was the feature where I could input my own recipes and find their point value.  I like the flex plan because you can eat your own food, and I like to cook, so I could use my old recipes and still stay on the plan and I would KNOW what the point value was.  The pay website also had point values for different restaurant meals and some neat chat rooms.  I definitely logged on frequently while I was in the “losing phase” of weight watchers, and I found it motivated me when I felt a little lost.

I hit my goal weight after about 14 weeks ( 17 pounds), and I paid for a total of 5 months and became a lifetime member almost exactly a year ago.  I go to the “free website,” but I don’t find it quite as interesting or motivating, but I’ve been “maintaining” so I guess I have the tools that I need (A.M., private correspondence, 10/13/08).

February 2, 2009 at 7:37 pm 44 comments

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

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

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

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

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

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

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

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

January 11, 2009 at 11:44 pm 1 comment

Internet diagnoses: Trust them or toss them?

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.

December 1, 2008 at 8:35 pm Leave a comment

Are We Experiencing a Flu Epidemic and Other Problems With Search Terms

1112-biz-webflu-190Trends in online behavior are fascinating. Bill Tancer, in Click, analyzes why fewer porn sites are accessed on Thanksgiving and other aspects of what people do online. When people are sick, they seek health information online, with the Internet surpassing doctors as a source of health information for the first time, according to Manhattan Research. It is not surprising that many people turn to the Internet to learn about the symptoms of or diagnose a case of influenza.

When all these ill people do their health searches, Google Flu Trends uses their data for early detection of an outbreak, having found “a very close relationship between the frequency of these search queries and the number of people who are experiencing flu-like symptoms each week.” This “fruitful marriage of mob behavior and medicine” has been validated with data from Yahoo as well, according to the New York Times.

They must have found that enough people do Google searches on reasonable terms for Google Flu Trends to detect an outbreak of the flu. While it is heartening to think that the flu and other diseases can be detected in this way (remember SARS?), I am concerned about relying too heavily upon this means of detection because there are many other things to do when you think you have the flu and even if you do a Google search it doesn’t mean you have the flu.

1) What people do when they have flu symptoms:

  • Call Mom (did Manhattan Research rank Mom with the Internet and doctors as as a source of health information?)
  • Email Mom
  • IM a friend
  • Tweet many friends (while checking out the CDC’s flu prevention tips)
  • Post a question in the countless sites with discussion forums or Q&A
  • Look on WebMD, Mayo Clinic, or another health website
  • Use a specialized medical search engines
  • See a doctor

I assume that all the data resulting from these activities is not tracked by Google Flu Trends. The data that is included is from the use of Google. Which brings us to the second point, that of the dangers of extrapolating too much from search terms.

2) Search terms are not accurate indicators of disease because:

  • False-positives can occur. There have undoubtedly been many searches on “flu” to learn more about Google Flu Trends yet this does not mean we are currently experiencing a flu epidemic.
  • Only a doctor knows for certain. People with a cold or a fever from another cause may use the same terms Google associates with the flu. In fact, they may think they have the flu.
  • People with flu symptoms may search terms or creative misspellings Google isn’t tracking.

Many successful technologies are used in ways other than the originally intended ones and, even if this one doesn’t help the CDC, there is entertainment: “For those of you with the dichotomous penchant for tracking disasters like hurricanes, Google Flu Tracker will be great fun.” For humor, check out the Ads by Google accompanying some of the posts about this news; I saw orange juice advertised to “fight those nasty cold and flu bugs” as well as information on “why flu shots may or may not be advised for you.” Search terms are useful in oh so many ways.

November 13, 2008 at 7:53 am 2 comments

Mary Morgan and Adding “Oomph” to Dr. Spock’s Baby and Child Care Online

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?

October 13, 2008 at 6:53 am 3 comments

How Many People Does It Take to Make a Success: A Look at Qwitter

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.

September 28, 2008 at 8:17 am 5 comments

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

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

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

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

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

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

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

August 19, 2008 at 1:26 pm 12 comments

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

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

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

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

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

July 20, 2008 at 4:14 am 4 comments

Optimal Use of a Scale for Weight Loss

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

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

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

June 21, 2008 at 1:09 am 10 comments

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

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

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

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

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

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

May 21, 2008 at 1:22 am 7 comments

The Impact of the Democratization of Health Information on Elders

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.

May 19, 2008 at 12:12 am 1 comment

Atypical Patients Fall Through the Cracks

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

Atypical Patients Struggle to Find Information and Support Online

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

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

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

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

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

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

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

The Stigma of Disease Is Greater

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

Health Sites Need to Meet the Needs of Atypical Patients

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

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

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

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

May 5, 2008 at 1:30 am 2 comments

How Social Networking Dilutes the Definition of Friendship

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

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

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

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

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

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

April 30, 2008 at 12:57 am 3 comments

Using MySpace for Health Information: Where is the Empathy?

MySpace has over 300 million accounts as of 2/3/08 and was the #1 website in the US at least one week in 2006. If someone is a regular user of MySpace and has a health question, it is easy to turn to one’s community for help. MySpace Forums have a Health and Fitness section with exercise, general, and nutrition forums. The most active discussion under Nutrition is a thread on diets started 6/9/05 and it includes a post from someone who offer 59 ways to eat less of which many are potentially extremely dangerous. The 1300 replies range from serious posts about anorexia to advertisements. The other forums are similar, with a mix of serious, frivolous, and seemingly harmful discussions about bodybuilding, natural remedies, steroids, etc. There is a broader mix of comments than in most health forums and the amount that are off topic or what I perceive as far from helpful is far greater than in other forums I have looked at. Most other health forums tend toward highly supportive comments or advice. Are there different social norms in MySpace that lead to less empathic behavior?

March 10, 2008 at 5:32 am 10 comments

The Disconnect Between Patients and Doctors

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

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

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

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

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

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

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

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

March 7, 2008 at 9:36 am 5 comments

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

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

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

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

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

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

By participating in this interactive discussion you will learn:

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

March 6, 2008 at 2:16 am 6 comments

Who Am I Today? The Problem of Multiple Online Identities

At a course I taught on Online Health Communities, one of my students described how he investigated and tracked down a person who had a dozen personas in the community he managed. MIT Technology Review reported how a social networking site, Moli, allows (and encourages) users to develop multiple profiles and control access to them. The issue here is that everyone has multiple facets and it is difficult to portray and maintain multiple personas online, whether for honest or fraudulent purposes. I may not want the readers of eLearn Magazine to know that my passion in life is swing dancing (oops!) or to package my consulting skills to fit a profile form. LinkedIn, for instance, only allows you to select one industry. I selected “e-learning”, but could have accurately chosen “higher education” or “health, wellness, and fitness”. “Dance” isn’t even listed.

March 4, 2008 at 10:33 pm 1 comment

Increasing Health Literacy and Awareness on TV

If I was a screenwriter and needed an au courant health problem to feature, I know where to turn. The Winter 2008 issue of Real to Reel provides a synopsis from media sources and leading health agencies, including how malaria-infected mosquitoes are being used to develop a new vaccine and how a door-to-door salesman donated a kidney to someone he tried to sell a vacuum cleaner to. It’s easy to imagine the taken-from-real-life dramas that could result and to furthermore see the opportunities to increase health literacy and awareness.

Hollywood, Health & Society (HHS), part of the USC Annenberg Norman Lear Center, helps entertainment writers with medical and health storylines. Their Sentinel for Health Awards “recognize exemplary TV storylines that best inform, educate and motivate viewers to make choices for healthier and safer lives. Past recognition has been given for storylines about breast cancer, diabetes, HIV/AIDS, alcoholism, disability, fetal alcohol syndrome, car crashes, organ donation, and safe sex.” The award was started by the CDC for soap operas and has been expanded to include “daytime drama, primetime drama, primetime minor storyline, primetime comedy and telenovela.”

While I am focused primarily on the use of health web sites and online health communities, I realize the strong influence of print, TV, plays, and movies. I wrote earlier this month about Ellen Goodman’s column about conflicting health messages and the difficulty of knowing what to do – or which study to believe – to stay healthy. The influence of TV, plays, and movies is more powerful since the message is more visual and designed to engage the viewer’s emotions (my heart was pounding the last time I watched Nip/Tuck). According to O Magazine, the CDC reports that 88% of Americans learn about health issues from TV and I imagine that the number is high for movies, plays, novels, and other creative media: virtually all include someone who is ill, dying, or dies during the course of the story.

Where is the line between accuracy and creative license? The CDC and other agencies are at the accuracy end, but efforts like HHS certainly increase the accuracy of the abundant creative outlets. On the one hand, Forbes reports that “a new study by researchers at the University of Southern California, published this month in the Journal of Health Communication,… shows viewers of an ER storyline about teen obesity, hypertension and healthy eating habits were 65% more likely to report a positive change in their behavior after watching.” And on the other hand, WebMD reports that the number of people having cosmetic surgery is increasing and that many people have inaccurate perceptions of the recovery process and the impact of the surgery on their lives due in part to television makeover shows like The Swan and Extreme Makeover.

Health web sites and online health communities share many of these problems in terms of their accuracy and potential impact, the primary difference being that they are not designed for entertainment.

February 27, 2008 at 9:17 pm 6 comments

Case Study: Reviewing the Cancer Survivor’s Network

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

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

January 28, 2008 at 1:49 am 1 comment

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

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

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

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

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

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

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

January 24, 2008 at 7:42 am 5 comments

Lowering the Barriers to Quality Health Care

I am helping design an online health community for Alzheimer’s caregivers, and one of the concerns we have is lowering the barriers to production and consumption of user-generated content. There are many sites that have only expert-generated content, but our theory is that caregivers learn from and support each other, and that writing about their caregiving experiences can be both cathartic and empowering since they are helping others. The challenges are how to design this effectively, how to get people using the site, and how to manage information quality.

This notion of lowering barriers came to mind as well when I read about how Massachusetts’ Public Health Council approved the opening of MinuteClinics at CVS. The clinics, staffed by nurse practitioners, are intended for the treatment of “minor problems such as sore throats, ear infections, and poison ivy, but not chronic diseases such as cancer or diabetes, nor serious emergencies.” There is a reported shortage of primary care doctors in Massachusetts, leading to overburdened hospital emergency rooms. What these MinuteClinics seem to have the potential to do is lower the barriers to receiving competent professional care.

Apparently there are many retailers and employers offering on-site clinics. Carl Mercurio, President, Corporate Research Group, commented that their “report doesn’t make any clinical observations or draw any conclusions about the quality of care delivered by retail clinics. It’s really a report about the economics of these clinics as a business model. Our primary conclusion is that retail clinics are sustaining heavy economic losses and will not reach their near-term expansion goals without a serious shakeout and industry consolidation. However, the retail clinic concept will survive in our view as a limited solution to a very specific problem, i.e., providing convenient low-cost care for a limited number of acute ailments. Overall, my understanding is that nurse practitioners are very well qualified to deliver the type of care administered in retail settings. However, I don’t have any particular insights to support or refute that view.”

A Pew Report on Online Health Search 2006 found that 80% of Internet users in the US search for health information, and only “15% of health seekers say they ‘always’ check the source and date of the health information they find online”, or “about 85 million Americans [are] gathering health advice online without consistently examining the quality indicators of the information they find.”

The barriers to performing health searches are low. Information literacy and health literacy skills are also low for far too many people. Since quality is a huge problem, arguably more so with medical information that any other type of information, effective branding is paramount. While I was initially not enthusiastic about the concept of clinics in stores, I believe they may serve an important need for many and are preferable to poor quality online advice, long emergency room waits, or ignoring a medical problem.

January 19, 2008 at 5:07 pm 2 comments


Lisa Gualtieri, PhD, ScM

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

@lisagualtieri


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