Walt Willett and Mollie Katzen on Pyramids, Butter, Sensual Eating, and Food Conversations

I heard Dr. Walter Willett speak about the evidence-based food pyramid developed at the Harvard School of Public Health, the Healthy Eating Pyramid, and immediately read Eat, Drink, and Weigh Less: A Flexible and Delicious Way to Shrink Your Waist Without Going Hungry by Mollie Katzen and Walter Willet. Mollie Katzen is the well-known author of many cookbooks, including the acclaimed Moosewood Cookbook, with more than 6 million books in print. I interviewed Walt Willett and Mollie Katzen by email.

Lisa Gualtieri: Do you characterize your books as weight loss books, healthy living books, or something else? Are you working on another?
Walt Willett: Eat, Drink, and Be Healthy is about healthy and enjoyable eating. Eat, Drink, and Weigh Less is the same, but focused on weight control. I’m working on another, focused on doing this with a limited budget.
Mollie Katzen: My books focus on making healthy, delicious food accessible to everyone.

Lisa Gualtieri: Are there foods where it makes a difference to buy organic or use specific cleaning processes before consumption?
Walt Willett: There is little evidence of direct effect on human health, but there can be important environmental benefits. So far, there is no real evidence for specific foods.
Mollie Katzen: If I have to prioritize organic, strawberries, nuts, bell peppers, and apples are at the top of my list. Also, if using citrus zest in a recipe, I try to be sure it is organic, so it won’t have chemical residue.

Lisa Gualtieri: With new research coming out all the time, how does one know what to believe especially when conflicting data arises?
Walt Willett: This is a critical point; you can find almost claim imaginable on the web. A key issue is to never view any study in isolation, but rather to consider all the evidence. We try to give this perspective on our departmental website: thenutritionsource.org.
Mollie Katzen: Fruit and vegetables, whole grains, legumes, healthy oils and nuts, are always winners – and no research will tell you otherwise. So if you maximize these in your diet, you’re on a good track.

Lisa Gualtieri: How does one evaluate trends – such as everywhere you look there are articles about Vitamin D now, and the supermarket is full all of a sudden with Probiotics?
Walt Willett: We do try to do this on our website.
Mollie Katzen: I defer to Dr. Willett on this one.

Lisa Gualtieri: I heard Malcolm Gladwell attribute the popularity of the Atkins diet to the ease of following it – most people know what is protein, what is a carb. The revised HSPH food pyramid is significantly more complex than the USDA one. What can make it easier for people to understand and follow it?
Walt Willett: I think our pyramid is really pretty simple: the key points are healthy fats, healthy carbs, healthy protein source, and plenty of fruits and vegetables.
Mollie Katzen: Dr. Willett’s pyramid is the one I recommend.

Lisa Gualtieri: Julia Child promoted the use of butter in cooking. Does the use of butter vs. butter substitutes really matter and how careful do people have to be about their purchasing decisions?
Walt Willett: It does matter if you care about your health. Julia Child was not really interested in health, and if one doesn’t care, then you can follow her.
Mollie Katzen: The use of butter is a personal choice. If you love the flavor, but want to keep consumption of it to a minimum, you can “spike” olive oil with just a little butter. You’ll get the flavor that way, but not the added saturated fat.

Lisa Gualtieri: What do you think about websites and mobile health apps for calorie tracking, activity tracking, etc.? Have you ever used them?
Walt Willett: I haven’t tried them, but I don’t think that they can really be accurate enough for calorie tracking… keeping an eye on your weight is best.
Mollie Katzen: I have never used them. I don’t like to eat by the numbers – I call that “cerebral eating.” I recommend “sensual eating” – choosing a preponderance of brightly colored, beautifully prepared plant foods, and basing one’s diet on these. Eating fruit and vegetables to satiety can make numbers unnecessary.

Lisa Gualtieri: What motivated you to start writing cookbooks and how do you believe your cookbooks have influenced people’s attitudes to food and food preparation?
Mollie Katzen: I’ve always loved food and cooking, and have seen firsthand in others (as well as experienced it myself) how acquiring cooking skills can greatly improve the quality of life in every way. I think my cookbooks have made healthy more accessible, rather than more mysterious. At least that has been my goal.

Lisa Gualtieri: Finally, as a web and twitter user, how do you see the web and social media changing how people learn about diet and nutrition, find recipes, and share their experiences with recipes?
Mollie Katzen: There’s a lot of recipe swapping and idea sharing on Twitter and Facebook, all of which allows the subject of food to be a conversation, rather than just one person giving instructions. It creates a virtual town square, where discussion, collaboration, feedback, and support can be mutual. Even though it’s technically virtual, in many ways it makes the communication more immediate, real, and democratic. It’s very enriching and it breaks the isolation so many people would otherwise experience.

Interview with Dana Jennings, the World’s Most Famous Patient Blogger

Dana Jennings writes what is arguably the world’s most famous patient blog about his treatment for prostate cancer. Just to be clear, I don’t have any statistics about how many readers he and other patient bloggers have. I believe his blog is the most widely read and best-know patient blog because of the number of comments he receives and its prominent location in the New York Times Health section, itself widely read. ComScore found that more than 123 million Americans visited newspaper sites in May and the New York Times led online newspapers with more than 32 million visitors and 719 million pages viewed during May 2010.

As an avid reader of his blog and an admirer of his eloquence, I spoke to Dana on June 18, 2010 about why he started the blog, how he writes it, and how it has helped him through his prostate cancer.

Lisa: How did the idea of writing a blog first come up?
Dana: I have been a working journalist since 1980. In October 2008, I was working on my 6th book and having trouble writing because I was obsessing over having cancer. At the same time I couldn’t find what I wanted online about prostate cancer even though there is a lot of information out there. So I thought I could write about this. I wanted to give the topic a distinctive voice and be honest, not just about prostate cancer, but about cancer and about being ill. I was concerned about my family’s reaction, but I spoke to my wife and sons and they were fine about it. A colleague put me in touch with New York Times health blogger Tara Parker-Pope who responded positively to the idea. It happened quickly after that.

Lisa: What has been most interesting for you about the process?
Dana: The two most interesting things about it were the extent to which writing it gave me an opportunity to find out what I thought about different aspects of having cancer, and the reaction to my blog, which stunned me. I but didn’t expect so many men to respond that I was articulating things for them or women to respond that I was saying what they wanted their husbands to say.

Lisa: How many readers do you have?
Dana: I don’t really get a count of readers for each post but some, like My Brief Life as a Women, have had hundreds of thousands of views. And a few posts have over 600 comments. I knew my blog had become well-known when Whoopi Goldberg made fun of me on The View.

Lisa: Do you read all the comments?
Dana: I read most. New York Times Op-Ed columnist Tom Friedman gets hundreds of comments and I suspect he doesn’t read all his comments, but it’s a different type of writing. I am a big fan of the 2-3 sentence comment, but even the long ones I skim. When I read my blog comments, I see that they really like me.

Lisa: Are any comments helpful or supportive?
Dana: It is helpful knowing that I’ve been able to help people, that I made it easier for people to talk about and go through this process. I am happy to read the advice in comments but I’m a strong-minded person and have my own ideas. It cracks my wife and me up when people suggest crazy cancer treatments.

Lisa: Are there gender differences in who reads or comments on your blog?
Dana: More women read my blog than men. Men and women respond differently: women tend to be more insightful and understand the emotion I’m trying to convey in the blog while men are more focused on data: name, rank, serial number. Men are more emotionally stunted in our society and think they have to be tough.

Lisa: Have you shown your blog to your doctors?
Dana: My oncologists have looked at it off and on, also the radiation technicians. They appreciate what I have to say. But I don’t write for them because my obligation is to my readers and fellow cancer patients.

Lisa: Is your blog edited?
Dana: My primary job is as an editor, so my posts go through a few drafts and then Tara Parker-Pope reads them and she may have some edits or changes which I look at. Finally a copy editor reviews it.

Lisa: How does the New York Times promote your blog?
Dana: It appears on the Health page with my picture, sometime highlighted at the top. Some posts have appeared as a most emailed article, which itself increases visibility, just like when a book appears on the bestseller list.

Lisa: Do you read other patient blogs?
Dana: I don’t. I spend time reading every day, but I read the New York Times and I read books. I try not to lose myself on the Internet. I’m 52, a dinosaur from age of print, although my sons are amused that I blog.

Lisa: Can you offer any advise about reading other people’s blogs or starting your own solely based on your own experiences?
Dana: I really don’t because I had the benefit of working here at The Times. But, if someone is obsessed about their situation and wants to write, then they should go ahead. It’s a big ol’ Internet.

Why a Private Person Goes Public: Jesica Harringon’s Battle with Breast Cancer While Pregnant

Jesica Harrington is a 5th grade teacher at Timber Trail Elementary School in Castle Rock, Colorado whose patient story was featured on the Johnson & Johnson (J&J) website and in their 2009 Annual Report. Jesica was diagnosed with breast cancer while pregnant with twins, lost one of the babies a month later, and “underwent a mastectomy before beginning four rounds of chemotherapy.” She searched for information online and found little on battling breast cancer while pregnant. Her father, who also searched, found out about a blood test that captures, identifies, and counts circulating tumor cells in patients with certain types of metastatic cancer, which Jesica asked her doctor to order. Jesica delivered a healthy baby boy, completed her cancer treatment, and is in remission. I contacted her because of my interest in patient stories, curious about how her story was featured by J&J and why she decided to tell her story in a very public way.

Lisa: You mentioned that being diagnosed with breast cancer when you were pregnant made it harder to find information. Did you find that the professionals treating were less prepared?

Jesica: Initially, the diagnosing doctor seemed insecure about diagnosing my cancer and in explaining how we would treat it.  It was through our (mine and my husband’s) persistence that we went around the recommended procedure and sought out an oncologist directly to help us learn about what we would do with breast cancer and being pregnant with twins.  My oncologist came highly recommended and had prior experience with women in my situation, so I felt I was in good hands.

Lisa: Did you search for information online about breast cancer and pregnancy, or did people recommend sites to you?

Jesica: I had friends send me all kinds of information, mostly success stories and current practices similar to what I was dealing with.  I searched for answers as well, especially because I had so many questions.  The problem was realizing there is a fine line between being/getting educated and just knowing too much.

Lisa: What did you find that was ultimately most helpful?

Jesica: Factual information about types of cancer, methods to treat, drugs and their side effects, and a couple of stories about local women, whom I talked with, who had been through breast cancer while pregnant.

Lisa: How did you learn about J&J’s test?

Jesica: My father was looking for methods to monitor how and if chemotherapy is working.  He came across a local news story, which led us to a newly released test used at the University of Colorado Cancer Center (UCCC).  He told me to take a look at the article, that it was something he thought I should do.  I contacted a rep from the UCCC and inquired how I could take the test.  I persuaded my oncologist to order the test and we went from there.

Lisa: Why did you decide to tell your story?

Jesica:   People were interested in the information I had.  I am a very private person, but also felt that this was something I had to share.  I couldn’t keep it secret, when my own life affected so many around me (students, parents, coworkers, family, friends, neighbors, doctors, other women in my situation, media…) In the back of my mind, I hoped that my diagnosis and battle with breast cancer could and would be used for future references.  After I had been diagnosed, all of my students and co-workers wanted to support me in my battle-they held a “carnival for the cure” from which all proceeds went to my family and me.  Through this event, local papers and news media were contacted.  My story initially appeared on a newscast and in a couple of newspapers.

Lisa: Would you have told others your story had your situation been more “typical”?

Jesica: Yes, but it wasn’t.  I knew that there had to be more people like me out there searching for information and feeling helpless.  Why not take what I’ve experienced and let others learn from it, both from a personal perspective and from a medical point of view.

Lisa: Can you tell me more about the process where J&J contacted, interviewed, and photographed you?

Jesica: Through a publication put out at UCCC, J&J contacted me about the CTC test. I was approached to educate people who are going through a similar experience and to get the word out about a test I found to be helpful during my treatment. I told J&J my story by phone and shared my CaringBridge page as well provided background about all I’d been through. A couple of people come out to interview me, take pictures, and shoot video, both at school while I was teaching and at home that evening. Everything was 100% accurate in both the article and video except they mentioned Boulder instead of Castle Rock in the video.

Lisa: How did you feel about including your students and your family?

Jesica: Fine; I thought it was for a good cause.  Someone could learn from my story and experiences and could see what to expect if they happen to be in the same situation.  I’d like to think I was a success story, which we all need to help us find motivation to fight a battle such as one with breast cancer.

Lisa: I was surprised J&J posted the two articles and videos at http://www.jnj.com/connect/caring/patient-stories/hope-against-cancer/ and http://www.investor.jnj.com/2009annualreport/medical-devices/hope.html without telling you – it seems like they should have let you know, do you agree?

Jesica: Yes.

Lisa: You mentioned that you did other interviews – what made you decide to?

Jesica: I felt strongly about letting others know about a blood test that was out there to help with tracking chemo throughout treatment.  I knew the information wasn’t prevalent and I wanted to get it out there.

Lisa: Has it been helpful for your friends and family that you were open about the process you were going though?

Jesica: Yes, information is very powerful.  I wanted my friends and family to know and understand what I was going through.  People always feel helpless when others are struggling with a disease and going through treatment and they don’t always know how to help, but by being open about it, I think they felt more comfortable in being there for me instead of feeling sorry for me.

Lisa: Finally, does it help you to know that you are helping others? Does talking about it help you process your own emotions?

Jesica: Yes, to both. I’m a teacher – it’s in my blood. I’ve written journals all my life; it’s something that helps me be able to process what comes my way, to reflect and cope.



From Twitter to Megaphones: Seven Lessons Learned about Public Health Crisis Communication

In Boston we took the availability and quality of our tap water for granted until May 1, 2010, when a major water pipe break interrupted water service to two million Greater Boston residents. Information spread quickly to citizens about the problem and what to do, all the more notable because the water main break occurred on a Saturday. In this age of consumer paranoia about withheld information, the Massachusetts Water Resources Authority (MWRA) was in front of cameras and online, communicating what they knew and what they were doing. Tufts University and the Boston Public Health Commission used communication channels ranging from Twitter to megaphones to get the word out. Their behind-the-scenes emergency planning processes, their response to this incident, and seven lessons learned from this short-lived crisis are applicable to many other crises.

The Evolution of the Tufts Emergency Alert System

Because I learned about the broken water main in a text message from Tufts University, where I teach, I spoke to Geoff Bartlett, Technical Services Manager in the Department of Public and Environmental Safety (DPES) at Tufts about the process they used to communicate about the broken water main. First he told me how Tufts Emergency Alert System started and evolved. Following the Virginia Tech massacre in 2007, DPES, University Relations, and University Information Technology invested in emergency notification system technology and developed policies for when and how it would be used. The Tufts Emergency Alert System was initially intended for life threatening emergencies after the events on the Virginia Tech campus showed the need for rapid and reliable campus-wide communication. In requesting student and employee contact information, Tufts made this clear since they thought people would be reluctant to participate if they anticipated inconsequential messages.

Tufts first used the emergency alert system to inform the campus of the status of a power outage in October 2008 because the email communication plan in place for this type of Tier 2 emergency wouldn’t work because of the lack of electricity. This initial use led to the revised policy that the emergency alert system should be used aggressively for dire emergencies but less aggressively when there is no threat to health, safety, or life. Almost exactly one year later, there was another power outage in October 2009, and short text messages were sent. While there was planning for H1N1, the emergency alert system was never used because there was no urgency to push messages. The third use was for the water main break.

How Tufts Creates Messages

While Tufts considered preparing messages in advance, it didn’t seem possible to anticipate every situation. Instead they created “Strunk and White” guidelines for crisis communication. Their three guiding principles for creating initial messages are:

1. What is happening
2. What you need to do now
3. Where to go for more information.

Messages must be succinct because of cell phone screen size and to increase the likelihood people read them, avoid jargon and abbreviations, and be composed for easy conversion into speech. While the Tufts community is tech-savvy, they are aware that not everyone is connected all the time therefore some messaging includes spreading the word. For many emergencies, especially life-threatening ones like violent criminal incident or tornado warning, content is pre-scripted by Tufts using sources such as the Massachusetts Department of Public Health.

In the case of the water main break, Massachusetts Emergency Management Agency sent out the initial message. When Geoff received the message on Saturday, May 1, he was in a command post on campus with police, fire, and EMS personnel where they were managing the public safety aspects of the Spring Fling concert. Because there was no reported danger or health threat, email was used initially. Later in the day, after Massachusetts Governor Deval Patrick declared a state of emergency, DPES fully activated the emergency alert system. In addition, email, word of mouth, Twitter, and the web were used to spread information.

I asked Geoff if there was concern about any health issues arising from students who drank tap water. He said that there was an FAQ that included the consequences of ingesting water. However the information they were receiving from the state agencies, and therefore their focus, was on the status of the water main break and what to do, such as the boil water order. Student feedback after the crisis ended was largely positive but included that there were terms, like boil water order, that they didn’t understand.

The Boston Public Health Commission Emergency Preparedness Process

To see how a public health organization responded, I looked at the Boston Public Health Commission (BPHC) website and spoke to Susan Harrington. She had guest-lectured in my Online Consumer Health course about their use of the web and social media and I wanted to see how they deployed them in an emergency like the water main break.

BPHC and its partners participate in emergency preparedness exercises to refine their coordination and response. In 2007, BPHC worked with the postal office on a large-scale exercise and last year they responded to the real-life H1N1 epidemic. Just last month, BPHC invited businesses, health care settings, and other partner organization to a Flu Review, where they discussed how BPHC responded, including what they did well, what didn’t work, and made recommendations as they prepare for the next flu season this fall.

How the Boston Public Health Commission Alerted Residents

Susan was in a city not affected by the burst water main on the Saturday the news was announced and received a call from work alerting her to the situation. Working in concert with federal, state, and city agencies, the Mayor’s Office and BPHC relayed important information and coordinated response efforts. The immediate issue was reaching people, which the BPHC first did through Twitter, Facebook, and their website. The Mayor’s Office posted information on its own sites and used its reverse 911 phone system to alert residents. Boston police officers drove up and down streets using megaphones and loudspeakers. BPHC set up conference calls with area hospitals and staffers were sent out to food-service establishments who needed to quickly adapt their procedures for the boil water order. Throughout the weekend, the Mayor’s 24-hour hotline added staffers to help answer any questions residents had. The Mayor’s Office and BPHC also called upon their partners, which included faith-based organizations, schools, and businesses, to spread the message through their own channels, and asked residents to inform the elderly who may not have access to the web and social media. The challenge was responding quickly and reaching as many people, wired or not, as possible. These techniques had been used to spread the word about H1N1 vaccine availability.

Twitter proved very effective at relaying up-to-the-minute news. While Twitter is global, people use the #Boston hashtag and other filters to get local information including traffic updates, event listings, and even local celebrity sightings. Not long after boil water order was issued, the Twitterverse was abuzz with the news – even dubbing a new hashtag for the emergency: #aquapocolypse. The most influential – and most followed – Twitter profiles were not only pushing out timely information, but passing on questions to BPHC, allowing them to respond and dispel any myths.

Creating Fact Sheets

No matter what the crisis, some people worry and they are the ones who especially need facts. One of the main BPHC priorities was posting information and fact sheets to the BPHC website. As a homeowner Susan knew what questions she had, but she had to consider the broad demographics of Boston in terms of where people live, the languages they speak, and their access to water.

BPHC worked with the Massachusetts Department of Public Health to create easy-to-read and culturally appropriate guidelines for the boil water order for Bostonians, including translating the fact sheets into multiple languages using a professional translation company with proofing by Commission staffers. These materials were later updated to reflect the lifting of the boil water order and subsequent flushing out instructions.

I asked Susan about the extent to which they date materials. In a crisis, knowing that an update is available and when it was issued is crucial. Throughout the flu response and boil water order, they posted dates on their websites, but in a non-emergency she said it is a challenge to keep an entire website updated. Fact sheets often are dated but other online materials may not be.

Health Issues and Disease Tracking

I taught a course in Shanghai once and remembered the advice I was given about the level of bacteria being higher in the tap water than Americans are used to. I slipped back into Shanghai-mode and remembered to rinse my toothbrush with bottled water and the myriad of other pointers I had been given. I was curious if Boston residents who drank tap water during the emergency expressed health concerns. Susan said that if pathogens were in the water, people may have experienced minor gastrointestinal illness after consuming that water. A greater concern would be for residents who are immunocompromised.

The BPHC uses a sophisticated surveillance system to track diseases in Boston. (In fact, Boston has been nationally recognized for its disease tracking system.) Health care settings report diseases to BPHC, which in turn, conducts a follow-up investigation and identifies the source of the illness, such as food contamination.  These disease patterns are tracked over time. In the case of the boil water order, there was no spike in gastrointestinal illnesses. Google has a less formal process of tracking disease patterns, collecting search phrases to find trends including the spread of illness. Google’s H1N1 flu trend matched up fairly well to Massachusetts’ trend lines.

Lessons Learned

Susan Harrington and Geoff Bartlett both thought the MWRA did a great job of letting people know what they knew, what they didn’t know, and what they were doing to find answers and repair the pipe. This was essential not just to inform people but to allay paranoia and fears given well-publicized situations like Toyota and Vioxx where information was not publicly disclosed in a timely fashion.

Some lessons learned about rapid health communication from the water main break are:

1. Develop a rubric to assess the type of crisis as it impacts your institution. When the crisis is over, review, solicit feedback, and refine using what the military call an After Action Review.
2. Identify and coordinate with partners in advance. In the case of the water main break, an impressive number of groups coordinated efforts seemingly seamlessly and, in many cases, behind the scenes. Ria Convery, Communications Director for the MWRA, told me that their response can be attributed to the 2-3 drills they perform every year “on a number of different scenarios ranging from dam failures to hurricanes to flu epidemics. Sometimes we perform a ‘tabletop’ exercise and sometimes we involve the whole universe of state agencies and run through an entire ‘event’. Every single drill, no matter the topic, provides an important opportunity for people to think through and be prepared for the worst case.”
3. Prepare a communication plan for each type of crisis. While newspapers write obituaries for famous people in advance, you can’t anticipate all eventualities. However, you can prepare guidelines and immediately use them. Flexibility needs to be built in to communication plans, even to the definition of a life threatening emergency and when to select modalities that “wake you up” or more passive ones like email.
4. Carefully construct messages to convey needed information succinctly. High-quality materials take time to produce because it’s important to first gather facts and then create and review accurate, appropriate, and easy-to-understand information, be they short like text and Twitter messages, or less constrained by length. Dating material is especially important in a crisis.
5. Create messages that inform and allay unnecessary fears. Think like – or talk to – your target audience. Be careful about jargon, although everyone in Greater Boston quickly became conversant quickly with “MWRA” and “boil water order”, which are not in the common vernacular. Terminology was also an issue with H1N1: swine flu was the term adopted by the press initially, but it was distracting because of the association with pigs.
6. Use social media, which can be both fast and local. Use emerging informal partners, who Malcolm Gladwell calls mavens, to facilitate the spread of messages in Twitter. But even when people are wired, they aren’t always online. The low tech megaphone and word of mouth works best for some.
7. Use crises to educate people. While the water main break left many people with a heightened appreciation for their tap water, it was short-lived. However there may be a missed opportunity here to educate people about water sources, safety, and conservation as well as about emergency response.

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.

The “Dark Side” of the Internet for Healthcare

While Gunther Eysenbach is famous for saying no one ever died from using the Internet for health, the “dark side” exists: the people who obsessively search for health information, the people who forgo common sense to believe there are easy ways to lose weight and miracle cures for as yet incurable diseases. Another facet is the credibility of online information; I wrote about a company that was caught and fined for fabricating patient stories in Patient Stories on Health Web Sites Can Not Always Be Trusted in both e-patients.net (heavily commented) and MedPage Today’s kevinmd.com.

Another facet of the “dark side” is when technology is the focus instead of patients. We all, as patients, need eye contact when talking to a healthcare professional. I first noticed this when my children’s pediatrician started walking into appointments with a laptop. I was acutely aware of it when a nurse asked me very personal questions without looking at me, which I wrote about in EHR Etiquette and the Importance of Eye Contact in Clinician-Patient Communication, which was published in e-patients.net/ and The Health Care Blog.

Social Media at Sarasota Memorial Health Care System

Shawn Halls tweets for Sarasota Memorial Health Care System (SMH). He has been Market Research Manager at SMH for 12 years. Through him I met his manager, Peter Taylor, the Director of Marketing (pictured to the left). Peter essentially runs an internal ad agency for SMH responsible for both internal and external communication. I interviewed them on February 18, 2010 about SMH’s Web strategy and their use of social media.

Lisa: Start by describing SMH’s Web presence.

Peter Taylor, Director of Marketing, SMH

Peter: Early on we identified that a digital customer engagement platform was fundamental to the future success of all forms of marketing and communications at SMH. The components of this are our website, Twitter, Facebook, MySpace, Delicious, YouTube, Flickr, an external blog focused on a new bed tower construction project, and an internal blog/vlog written by our CEO.

Lisa: Why did you decide to use multiple social media technologies?

Peter: We decided to cast a wide net to increase the likelihood of reaching all of our target audience.  There are clear demographic differences; for example, MySpace turned out to be a great place to reach young mothers. Also, we use them differently; Twitter by definition requires quick, concise, newsworthy messaging whereas Facebook is more leisurely and facilitates more of an intimate relationship.

Lisa: What did you see as your opportunity when you introduced social media?

Peter: We wanted to focus on preventative healthcare and saw an opportunity to engage with our audience of patients and get involved in their daily lives in environments where they feel more comfortable (i.e., without being invasive). The advantage to patients beyond education was that if they need to use our services (hospital or outpatient), everything is more familiar and less alienating. They aren’t meeting us for the first time while in a gown being stuck with needles.

Lisa: How do you know what’s effective?

Peter: We use qualitative and quantitative plus anecdotal metrics. We use Google analytics, not just to see how many visitors we have to our website, but to see where they come from and how they navigate through our site. Our website gets 80,000 visits a month (excluding internal traffic), most of whom find it through our url or a search engine. More and more are coming directly from our social media sites. For example we get almost 5,000 visits a month from our Facebook page.  We use focus groups on and offline to track our presence and improve our content, navigation, etc. We also continually elicit feedback from our social media sites which has been invaluable.

Lisa: Who actually manages and uses social media for SMH?

Peter: Each person in our marketing department is the CEO of one social media site. This way they each develop an expertise and can dedicate the time needed to stay active.

Lisa: Can you give me any time estimates?

Peter: Shawn, for instance, uses twitter. Probably on average 30 – 45 minutes a day but it varies.

Shawn: I registered @smhcs in November of 2008 but didn’t start actively tweeting until March 2009.  My vision was to try out social media.  In keeping with our goal of connecting to and engaging with our community before they need us, social media is ideal.  I love Twitter because it allows us to respond to customer service issues in near real-time.  Since I am the only person currently tweeting at SMH, the policies that guide my tweets are mostly between my ears.  We are in the process of opening Twitter up to the rest of the Sarasota Memorial staff, though, so we’re working on a more formal approach that will be shared in the coming weeks. Right now I don’t have a separate Twitter account for just personal use.  I don’t use our Twitter account to just promote our hospital, certainly I do that too, but I’ve tried to interject professional and personal tweets in the Sarasota Memorial account to add a little personality to it.  Therefore, I’ve never really felt a need to have a separate Shawn Halls account.  What you see in @smhcs…is Shawn Halls.

Lisa: Do you also use social media internally?

Peter: Internally there is limited access to social media right now. We are taking baby steps. As Shawn said, we just granted internal access to Twitter 60 days ago. We recently developed social media guidelines for our 4,000 employees which are still in the process of being implemented.

Lisa: What are the internal concerns?

Peter: HIPAA violations, privacy, and somebody posting/saying something stupid they would regret later.

Lisa: Are there any concerns about disgruntled employees or whistleblowers?

Peter: Yes, these are valid concerns but we would treat them like any other situation where this may arise, independent of technology.

Lisa: What about externally – have there been any concerns raised?

Peter: Nothing yet but we will continue to monitor it very closely.

Lisa: What is your biggest success to date?

Peter: Traditionally marketing has been a top-down exercise but that is reversed in social media. As a result our biggest success has been the way we have reconfigured our entire marketing activity to start with the consumer and not the product. This consumer-centric philosophy has improved our overall marketing and communications. We truly now have an consumer engagement platform.

Lisa: What has been your most serious problem?

Peter: Getting employees on board when they can’t access all social media sites from work at this point. We are very fortunate to have a visionary CEO who has embraced our digital strategy and let us “get our hands dirty” before we had all the answers and who has given us permission to fail if necessary.

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.”

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 Watchers’ Success Stories and Livestrong.org’s Survivorship Stories. Both sites include extensive libraries of well-written stories about people’s experiences losing weight and surviving cancer, respectively.

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

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

“I 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.”

Health Stories: Triggers for Seeking Health Information Online

When you design a health Web site, the most important questions to ask are how and why someone will come to your site. To help my Online Consumer Health students answer these questions for the sites they design, they create personas and then develop scenarios that start with the persona’s trigger for going online and continue with the persona’s ongoing education and support needs.

Triggers can be related to the calendar, the news, an existing health problem, a concern about a potential health issue, or a new diagnosis or prescription. Triggers can occur because of the time of year: searches for “diet” spike on the first week of each new year and crash a week later. Bill Tancer reported on the frequency of health searches related to a diagnosis of a famous person in the news. The most common trigger is the need to learn more about one’s own or a loved one’s health issue. Susannah Fox said, “A medical crisis flips a switch in people.” With 52% of online health inquiries on behalf of someone else, a loved one’s medical crisis is often the trigger that leads to health searches.

Jill D. is a researcher from New Hampshire whose mother was diagnosed with a gastrointestinal tract tumor. Shocked and worried when she heard this, Jill wanted to immediately learn more. She needed to understand what the diagnosis meant for herself and to help her mother understand it; she also needed to help her mother evaluate treatment options. Jill doesn’t live near her mother so couldn’t go with her mother on her next doctor’s appointment. She would have felt comfortable asking her own doctor questions, but didn’t have an appointment otherwise scheduled. So she went online.

In June 2006, my (then) 74-year-old Mom was told that she had a gastrointestinal tract tumor that was probably cancerous.  As soon as I heard, I wanted to find out what treatment options would likely be offered to my Mom as well as the statistical likelihood of survival.

I looked online for information because I’m not in my doctor’s office often enough to be able to ask my own physician, “Say, what do you know about tumors of the GI tract?”  Also, I wanted to browse through written information at my own pace rather than trying to listen closely to a quick data dump.

I looked online over the course of several evenings.  I know that the trustworthiness of information on any given website is highly dependent on the source of the information, so I concentrated on sites provided by highly reputable medical establishments such as the Mayo Clinic and the US National Institutes of Health.

By far the most useful information for my purposes was available at the National Cancer Institute.  The reason I found it so helpful is because I was able to read the same article in two versions, one intended for patients and the other for medical providers.  I am not a medical provider but I am used to reading dense, scientific journal articles.  Thus I carefully went through a page entitled, “Gastrointestinal Carcinoid Tumors Treatment“.

I learned that these tumors tend to grow very slowly and, if the tumor is localized, the 5-year survival rate is 70 – 90%.  My Mom was wondering if she would be subjected to radiation treatment but this article indicated that radiation is rarely helpful for these types of tumors so I told her that her oncologist would probably not prescribe radiation.  Further, I found out that tumors smaller than 1 cm rarely spread to other areas (metastasize) but that tumors greater than 2 cm frequently metastasize; this told me that my Mom’s 1.6 cm tumor could go either way.

None of the information in the preceding paragraph was available on the page intended for patients, so I was grateful for the chance to read the pages intended for health professionals.  I had to look up a few words, such as “telangeictasia” (the formal term for spider veins, one of the potential signs of GI carcinoid tumors).  Despite my incomplete medical vocabulary, I felt reasonably confident that I understood the article and wouldn’t misrepresent the information when relaying it to my Mom.

This story has a happy ending because my Mom underwent surgery to successfully remove the tumor and—even better—the tumor was not at all cancerous.  Six weeks after the operation my Mom was feeling healthier than she’d felt in years and went off on a long car trip.

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.

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.

How Celebrity Doctors Use their Online Presence to Communicate with Healthcare Consumers

Erin Dubich, a graduate student at Tufts, and I are doing a study about “celebrity” doctors who use their online presence to communicate with healthcare consumers.

Please help us by telling us which celebrity doctors you believe have an effective online presence and why: Dr. Gupta, Dr. Oz, Dr. Phil, Dr. Richard Besser, or another? We are interested in those who have Web sites, blogs, etc., unlike, say, Dr. Ruth, a celebrity doctor whose presence is not online.

The characteristics we are looking at are:

Basis of reputation (credentials, job, books, TV, etc.)
Website(s) featured on
Where seen besides website (TV, radio, books, syndicated column, etc.)
Topic(s) of advice/articles (general health, sexual health, etc.)
Type(s) of advice (ask the expert, interviews, etc.)
Why is the doctor an effective health communicator (timeliness, credibility, topics, reach to common concerns or fears, etc.)

If you have examples of celebrity doctors who you believe are not effective or exploit their fame or their position, we would like to hear that too.

Please post a comment or email me. We appreciate your help and will post our compiled results and conclusions.

Improving Patient-Physician Communication about Internet Use: Why “Don’t Ask, Don’t Tell” Doesn’t Work

I met Trisha Torrey, who writes a Patient Empowerment Blog, at the 2009 Connected Health Symposium in Boston, October 21-22. She wrote about my research in Your First Medical Opinion – Don’t Ask Don’t Tell? and included a poll. The results (you see them after you vote) show that 55% of the 40 respondents so far ”don’t usually tell my doctor about my online research”. Trisha has also written about Sharing Internet Health Information With Your Doctor where she presents a collaborative approach and guidelines for sharing information with a doctor, starkly contrasting with the patient rather scathingly portrayed in When the Patient Is a Googler.

I presented about patient-provider communication at the Medicine 2.0 Conference in Toronto September 18, 2009.  My extended abstract, Improving Patient-Physician Communication about Internet Use: Why “Don’t Ask, Don’t Tell” Doesn’t Work, follows:

Background: A disconnect currently exists between patients’ use of the Internet and their consultations with their physicians. Too often, patients don’t tell their physicians about their Internet use and physicians don’t ask; both suffer due to the erosion of trust and missed educational opportunities. Better patient-physician communication about Internet use is needed to help patients become truly empowered healthcare consumers.

Objectives: Too little attention is paid to improving how patients locate and use health Web sites and communicate about their use of these Web sites with their physicians. The very people who can best help patients, their medical providers, become disconnected from these so-called empowered healthcare consumers, who use the Internet instead of, before, or after consultations with their physicians without it being discussed or integrated into their care. Poor health outcomes can occur when patients have unexpressed concerns arising from the Web sites they have accessed, don’t believe their physician when a diagnosis or treatment plan differs from what they obtained from the Internet, use their doctor for a second opinion without disclosing that they obtained their first online, make poor decisions without or disregarding medical input, or scour the Internet for miracle cures.

Methods: Based on a literature review, extensive evaluations of health Web sites, and interviews with patients and physicians, better health outcomes for patients can be provided through the design of better user experiences, physician education about patient use of the Internet, patient education about effective Internet use, and the integration of Internet use into patient-physician consultations.

Results: While the designers of e-commerce Web sites focus on user experience design to create successful initial and repeat visits, designers of health Web sites often overlook the importance of the user experience. To help healthcare consumers in all aspects of locating and using online health information, health Web sites need to accommodate the range of needs and varying degrees of health literacy of site visitors. Well-established user experience design techniques can facilitate this, namely the use of personas, competitive analysis, and formative evaluation at all stages of design and development. Health Web sites can also incorporate guidelines about when and how to communicate with healthcare professionals about the information on the Web site.

Physicians need to have a better understanding of the extent to which and the reasons their patients are online before, and will likely go online after, a consultation. Currently, physicians rarely ask patients about their use of the health Web sites or any concerns that they have as a result, nor do they recommend reliable Web sites to newly diagnosed patients. Many fear the patient who arrives with a ream of printouts or who takes over a consultation. But worse than that is when patients have unexpressed fears or distrust their diagnoses because of what they accessed online. Physician training about how and when to ask patients can be aided by adding questions about Web sites used and any concerns to the form patients fill out in the waiting room, and physicians can receive guidance about reliable Web sites to recommend to their patients.

When patients go online, they often start at a search engine and rarely determine the source or date of the information they are using. Better patient education is needed on how to discern credible Web sites and health information on the Internet, a skill that is becoming even more important with the wealth of user-generated content, the many erroneous or misleading Web sites that compete for their attention in searches, and the immediacy of access possible from Internet-enabled mobile devices. Furthermore, patients need guidance about how to discuss their Internet use with their physician appropriately, without taking over the consultation or providing conclusions to a physician who is probing for symptoms. Finally, patients need to seek recommendations for Web sites to use when they leave a consultation with unanswered questions.

Conclusions: Patient use of the Internet disconnected from physician care can be detrimental. The benefits of Internet use can accrue with better design, education, and communication. More effective health Web site use can occur through improved design practices, physician and patient education, and patient-physician communication integrating patient Internet use. Better communication can be facilitated by questions on patient forms and guidelines on health Web sites. The next step is testing these hypotheses. The expected outcome is better informed patients whose Internet use is integrated into, rather than disconnected from, their medical care.

The Ephemeral Nature of Patient-Provider Consultations

I have seen many examples of ephemeral art: the chalk artist whose work will be washed away; the graffiti artist who uses mud instead of spray paint; and the Washington Monument’s face lift with specially designed scaffolding and draping. Ephemeral art is described as being transient and the fleeting, with no physical remnants (other than photographs).

A consultation has an ephemeral nature as well, with the physical remnants being doctor’s notes. Only rarely do patients have access to these, one exception being the OpenNotes© Project at Beth Israel Deaconess Medical Center which, according to a description, will “evaluate the impact on both patients and physicians of sharing the comments and observations made by physicians after each patient encounter.” Tom Delbanco, MD, anticipates this will improve patient recall and transform the doctor-patient relationship.

This may change what doctors write since they know that patients might read their notes. It may help patients with comprehension and recall, which have been shown to be reduced especially with a new diagnosis, and hopefully with adherence as well. There may be unanticipated results.

Certainly one of the most common ways to increase recall of a consultation is to increase the number of people there. I saw this first-hand as a patient advocate. Some of the responses, in comments and emails, to Why I Became Interested in Health Literacy, suggest ways of capturing a consultation with audio or video. There are clear advantages to this for patients who can then listen as many times as needed following the meeting, although the immediate opportunity to ask questions is lost. But, like a doctor who may write notes differently knowing they are available to the patient, a recording can change the nature of a consultation.

Knowing that OpenNotes© is new and that the other suggestions might be hard to implement, I asked some colleagues about their experiences with capturing what takes place during a consultation.

Some patients capture the instructions and the keywords. Tania Schlatter, a graphic designer, said her strategy is to “make them write it down for me. For example, my son has allergies and I made an appointment with the RN. She rattled off so much stuff I made her write it down for me. It was a messy scrawl on a bunch of stickies but that’s my reference now.”
 
Gilles Frydman, founder of ACOR.org, said that health literacy skills are no different in France than in the US but that “French doctors all the time record summaries of the conversations” for their patients. He went on to say, “They end up knowing the patients infinitely better than the average US doc using many times more technology. And the French patients are not more health literate than their US counterparts. Good health care is personal; technology should have enhanced that fact, not replaced it.”

Finally, I spoke to Paul S., who said, “The medical people I’ve worked with lately have been pretty good about writing down essential details such as over-the-counter drug names or suggested things to do or not do. Sometimes they have standard handouts that they print off on demand. That said, it would be really interesting to experience the OpenNotes process to compare what I think I got from the conversation with what the practitioner intended to convey. I don’t have the sense that I’ve missed anything from my consultations, but then that’s the point – I wouldn’t know! I have on occasion obtained a physician’s notes about tests or diagnoses, and have wished for someone to interpret the medical jargon. These are notes intended for other medical professionals, so the jargon is appropriate for that purpose. The interpretation of such notes for me might need to be, say, 3 times as many words because I know a fair bit about human biology, but it could easily be 10 or more times as many words for someone with less knowledge. And I know people for whom no amount of interpretation would be enough – they don’t want to understand anything, they just want the bottom line.”

My own recent experience with poison ivy (for the first time) was that my recall was not aided by husband, who had accompanied me to the nurse practitioner, but it helped me when I was frustrated. He repeated to me what she said: “It will get worse before it gets better” and “Nothing will make it go away faster, just reduce the symptoms.” His repetition helped me through a long two weeks.

It’s easy to reflect on the impact of changes: with the demise of Marcus Welby-like home visits, doctors could see more patients but could not see their home environments; and patients were in a much less comfortable environment, possibly impacting their health literacy skills due to the discomfort of being in a waiting room or being in an examining room in a paper gown. With all the technology available for every other aspect of our lives, and for healthcare in particular, there is no technological approach in practice that I know of that captures a consultation. It will be fascinating to see the results of OpenNotes© and mechanisms to give patients more access to health records. While ephemeral art changes the viewer’s reaction, knowing its transient nature, there seem to be few benefits to the ephemeral nature of consultations.

[Note: I just came across Amber J. Tresca's Get the Most from Your Doctor's Appointment, which recommends bringing paper to a doctor's appointment to use for taking notes.]

Why I Became Interested in Health Literacy

Much like love and religion, health literacy is a topic that many people have a revelation about. It is not explicitly taught in school (unless you study Health Communication or a related topic); instead people have personal experiences that lead them to learn about health literacy and recognize its importance in all aspects of healthcare.  

My health literacy revelation came while I was a patient advocate for a Cambodian refugee who had cancer. I won’t go into the details of his health condition; just that I took him and his wife to his doctor’s appointments. During the appointments, I encouraged him to talk about his symptoms and medication side effects and asked about test results and treatment options until I understood them. I always made sure the couple were following and checked to see if they had questions.

There are many aspects of patient advocacy I could expand upon, but what struck me the most was how the couple would ask me on the drive home and even weeks later to repeat what the doctor had said. This was information that I retained but they did not. As I started to read about this, I discovered that studies had been done on the emotional impact of disease and how comprehension and retention were impacted.

While language and culture may had been factors, I believe fear had a stronger impact on this couple’s health literacy skills. Now, when I teach, I include health literacy, especially for its role in the design and evaluation of health Web sites. When someone goes to a health Web site, poor health literacy skills can influence the search terms used, the Web sites selected, and how information is used.

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.)

WebMD Gets an “A” for Swine Flu Guide and a “C” for Guide to Never Feeling Tired Again

WebMD.com is often listed as the most popular health Web site. I find their design is too busy and their content varies considerably in quality. Every time I look at WebMD for a specific purpose, I am distracted by the ads, such as a video advertisement playing next to the text I am reading – how distracting is that? Sometimes I am there for a specific purpose and find myself clicking on the slide show or provocatively-titled articles – did someone say stickiness?

Some of their content deserves an “A”. In an analysis, their Swine Flu Guide was superior to the CDC’s and other sites at providing answers to the questions likely to be on healthcare consumer’s minds.

Other content is less impressive. The most recent article that I read when I was at WebMD for a different purpose was the irresistibly-titled guide to never feeling tired again. I was surprised that the guide, subtitled “22 ways to tackle life’s biggest energy zappers”, was from Redbook Magazine since I thought WebMD wrote their own content. The first page of the four-page article was about how to “Energize Your Diet”. It recommended that I eat breakfast to feel perkier, stay hydrated, etc. While I questioned is I wanted to feel perkier, most of the advice seemed reasonable.

I had just finished teaching a course and asked one my students, Alicia Romano, a master’s candidate in the Friedman Nutrition School at Tufts University School of Medicine and a Dietetic Intern at the Frances Stern Nutrition Center, for her opinion on the article. She responded,

As far as the nutrition related pieces are concerned (generally the first page of the article) the information is pretty accurate in terms of increasing your energy throughout the day (keeping your blood sugars stable and staying hydrated).  I haven’t read much related to the omega-3′s and increasing your energy, so that was interesting.  As far as the other information was concerned, it sounded a little “fluffy” to me, to be honest.  I think all of the tips are good, but overall, I think getting enough sleep, staying hydrated, exercising, and eating healthy and frequently throughout the day are the major keys to energy.  I was not too happy to see that they reviewed some of the new “products” at the end.  I have never even heard of half of those, and I’m sure most readers haven’t either.  If anything they are going to be informing readers of these products that they shouldn’t even try.  Their reviews weren’t on the efficacy either, just a simple quotation. I think the title is a little deceiving as well, but then again, it is from a magazine (Redbook).  I was actually surprised to see they would post a magazine article on WebMD (Personal correspondence, A.R, August 11, 2009).

I appreciate Alicia’s assessment and, based on her analysis and mine, I give the article a “C”. Some good suggestions but only a few references, no links, an introduction with only the merest hint of the content, and no conclusions or resources for further exploration. While WebMD provides many mechanisms to share an article, there are none to comment on or rate the accuracy or usefulness of an article so neither Alicia or I could post our feedback. I looked for the original Redbook article and found that while it seemed essentially the same, although split onto more pages, the links to useful sites such as the American Dietetic Association (ADA) were removed in the WebMD version. Can I lower the “C” to a “C-”?

Strategies to Find Reliable – and Avoid Wacky – Health Web Sites

My friend Jan, a breast cancer survivor, told me about her use of complementary and alternative medicine (CAM) Web sites and how she has developed a “wackiness filter” to determine which to pursue beyond an initial glance. Interested in learning if wackiness filters are common, I posted a question in twitter about what are the attributes of a Web site that makes you convinced it is “wacky” and what are the warning signals to you? I further asked if this was more of an issue with CAM.

I heard from S.R., who said, “I am in good health and have never had any health challenges. So, I am not sure how useful my strategy is. It’s all talk until then, no?” She looks for “wellness as opposed to disease.” Two of her strategies are reading books before going online and using the resources provided by graduate programs in CAM.

I am fairly receptive to alternative therapies. Being half (East) Indian helps me appreciate them more easily perhaps. But I have a strong Western bias for controlled studies and scientific evidence.

Favourite med resource is internet, but it is just one of the tools. I use my GP to confirm or point me in another direction. Hardly ever rely on her exclusively any more (she is overworked). I also have an old CPS (drug directory) — paper copy. I ask all my friends for their experiences, especially a friend of mine who is a Buddhist and extraordinarily accepting.

I don’t have the skill to understand random control studies; but tend to be cynical b/c of how they are funded. This means I tend to rely on people who interpret them for me like T. Colin Campbell (author of China Study). He is an especially good source because he too tries to integrate east and west, with a western sensibility.

Strategy is always to rely on corroboration – triangulation, isn’t that what researcher’s call it?

If a pharmaceutical company funds a resource, I am ten times more skeptical, with good reason.

For alternative therapies, I tend to read books first, then go to the web from there. Maybe the slower reading, and complete thoughts help me understand where I would be hesitant online. Alternative medicine does not spring from nowhere, and it is not difficult to figure out who is flaky and who speaks with authority borne from wisdom (unlike western medicine, imho). I often email authors; I love living in a world where this is possible.

I have looked at graduate programs in alternative medicine. They understand the western mind and what it takes to reassure (if only to get funding!). I have followed their resource links in the past, and liked what I found.

I never use Google to search for symptoms. The results are a mess.

My undergrad degree is in Biochemistry, and I am in the health care industry. So I am not uncomfortable with the lingo.

I try to pay a lot of attention to my pain signals from my body. I am not great at this, but I’m learning. (Personal correspondence, S.R., May 10, 2009)

Empathy Without Communication Is Mind Reading

Pam Ressler, RN, BSN, HN-BC, and I discussed how healthcare professionals, family, and friends use empathy vs. sympathy to respond to someone who is ill when I told her about my blog post. Pam had insights based on both professional and personal experiences. She told me about Empathy vs. Emotional Reasoning in Nursing, in Advance for Nurses, which Pam posted a blog entry about. The article defines empathy and emotional reasoning as:

Empathy is defined as the ability to understand another person’s circumstances, point of view, thoughts and feelings. When experiencing empathy, one should be able to understand someone else’s internal experiences.

Emotional reasoning is defined as ‘a cognitive error whereby a person who is nervous or anxious resorts to emotional reactions to determine a course of action.’

The article advises “empathy without communication is mind reading. Listen to patients; provide education, but don’t give advice.”

Pam also mentioned a study about doctors and empathic communication that “sheds light on the types of situations and remarks that physicians should recognize as opportunities to express understanding and support… empathic responses can be brief and do not make consultations longer.”

Blogging for Fun and Profit – Or at Least for Validation and Insights

I had a great discussion today with a colleague about her insights on What’s the Right Thing to Say to Someone Who Is Ill? based on her professional and personal experiences. She validated my ideas and inspired me to take them in new directions. It also reminded me why I like to blog.  Recently I was a featured faculty blogger on the Tufts University home page and said, “As an academic, you have endless ideas but you don’t always have the time to pursue them. What I find the blog is great for is taking some of those ideas, fleshing them out, and posting them… Not only are they are there to go back to when time allows, but I get feedback from people who read my blog and write comments.”

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.

How Useful Are Online Health Quizzes?

In How useful are online health quizzes? Consumer Reports Health.org, June 2009, I say, “My biggest objection to [quizzes] is how they can be misused.” I go on to say that “Many people who take such quizzes do not necessarily know how to put the test and results in perspective.” Of course they can be fun too, but many are dealing with serious issues in a frivolous way and are not effective screening tools.

Have you ever taken one and with what result?

Health Stories: “The Price I Must Pay for Being Cured of My Tumor”

I almost didn’t recognize Paul S. when I saw him with no hair looking rather gaunt. He told me about his cancer and about his experiences with treatment, which included side effects during chemotherapy of potentially permanent hearing loss and numbness in his hands and feet. Paul felt like he had to do his own research because he was not “getting satisfactory answers from my treatment provider”. Here is his story:

I was diagnosed with a germ cell tumor and endured nine weeks of chemotherapy. I was advised of the side effects of the three chemo drugs in a very routine way, emphasizing the nausea, but not dwelling on the other effects, and not really mentioning that some side effects could be permanent.

One of the three drugs was Cisplatin (cisplatinum), a complex compound that includes platinum. During the first round of chemo, I experienced a high-frequency hearing loss. While I could still function in terms of hearing and speaking to other people, I was very aware of the loss in listening to music and even the normal background of everyday sounds – sounds were not as crisp as they had been.

I consulted my oncologists, one of whom said that this was a known side effect of Cicplatin, and that most people recovered their hearing when the drug therapy ended. I asked what he meant by “most”. He replied, “About 70 percent.” Now 70 percent may be “most” to him, but it sure isn’t to me.

From the beginning of my illness, I had started broadcasting news of my illness and treatment via e-mail to interested friends – an opt-in list after the first broadcast. One of the friends replied to my news of hearing loss with research and experience that his mother had acquired in dealing with a similar issue. This spurred me to do some investigation of my own, and it wasn’t hard to find lots of information on Cisplatin with a simple Google search.

What I learned is that Cicplatinhas been used for chemotherapy treatment for several decades, that the hearing loss side effect has been well known for most of that time, and that somewhat extensive research has been done on the nature of the effect and on ways to protect the body from the side effect while still getting tumor-reducing effects from the drug. The drug continues to be used because it has proven highly effective in killing tumor cells with otherwise not-too-awful side effects.

The bottom line is that there is no known way to avoid the hearing loss while still getting the tumor-reducing effect. The hearing loss effect *is* dose-dependent. Armed with this information, I insisted what my oncologist reduce the dose of this drug, and after discussion of the tradoffs, we reduced the dose by 15% for the second and third cycles of chemotherapy.

My hearing recovered somewhat toward the end of the first cycle. Each cycle consisted of five days of Cisplatin and two other drugs, followed by two weeks of one-day-per-week of just one of the drugs (not Cisplatin). So I got Cicplatin for five days, then was off of it for two weeks – one cycle. The loss was somewhat less during the second cycle, but also less recovery, and similarly for the third cycle.

At this point I have what is considered to be a permanent high-frequency hearing loss, accompanied (as expected) by mild ringing (tinitus). It apparently is the price I must pay for being cured of my tumor. I am angry about the loss, but have no target for my anger.

Chemo ended in mid April. During treatment I went through a spell of peripheral neuropathy- numbness in my hands and feet, another known side effect of Cicplatin. The numbness lessened over time, and shortly after chemo ended, I had some residual numbness in my feet but none in my hands. However, in the last two weeks, the numbness has worsened in my feet and has returned to my hands. My oncologist is at a loss to explain why the neuropathy should suddenly worsen weeks after I stopped receiving the drug that supposedly caused it. So I will be continuing my own research since I am not (so far) getting satisfactory answers from my treatment provider.

That’s the story so far. My tumor has gotten substantially smaller, almost to the vanishing point (according to PET scans), but I am not yet officially in remission. The numbness is not painful, but is quite annoying, and it’s worrisome because it shouldn’t be getting worse now. (P.S., private correspondence, 7/31/08).

Paul S. is doing well. As an update he said:

My health is good now. As of the last CT scan in January, there was nothing left of the tumor but scar tissue. I have another scan a week from now as a precaution.

My hearing may have improved slightly – the tinnitus is less, and I don’t get the distortion with loud sounds that I was getting. As for frequency response, well, at my age, there is going to be some high-frequency loss anyway. I know there is still a reduction in high frequencies, but I can’t say for sure at this point whether it is age or chemo. (P.S., private correspondence, 7/6/09).

I told Paul I hope he wasn’t offended that I called him gaunt and he said, “I’m sure I did look ‘gaunt’ when you saw me then – I certainly FELT gaunt.” One so often struggles with what is the right thing to say or how to hide the surprise, or even shock, one feels when seeing someone who looks very different than the last time you saw him or her.

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).

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!

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.

Web Strategies for Health Communication

I am teaching a new course, Web Strategies for Health Communication, and for it I am developing a number of case studies about the Web strategies healthcare organizations develop and how the strategies evolve. Families for Depression Awareness and  Roadback.org are almost done. They share the problem of too few people (paid or volunteer) with too much to do. Ritu Gill, Staff Member with Families for Depression Awareness, said, “We started a Facebook page hoping it would bring more people to our Web site but we don’t think it’s working.”  They use twitter but have 1 update so far.

The next cases are TuDiabetes.com, WeightWatchers.com, Livestrong.org, CureTogether.com, Association of Cancer Online Resources (ACOR), healthfinder.gov, and ABC News Health. Of course there’s WebMD.com. Please give me suggestions for other organizations, especially ones with particularly creative uses of the Web.

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.

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.

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).

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

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

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

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

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

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

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

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

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.

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

Trends 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.

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?

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.

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.

The Dark Knight Showcases Gotham City’s Health Problems

Just as the rooftop spotlight illuminated the sky with a bat, The Dark Knight illuminates the health problems of Gotham City. Would The Joker unscarred have been a different person? (And which version of how he got his scars was true?)

The policewoman who sold out to the joker, Detective Ramirez, did so because her mother was hospitalized and she couldn’t afford the bills.  For that matter, being a patient in a Gotham City hospital is not such a safe proposition. Then there was Batman’s stitching of the dog bite on his arm, aided by his trusty Alfred. And the severe burns on half of Harvey Dent’s face, for which he refused pain killers or skin grafts.

Mental health issues were abundant, including Harvey Dent’s interrogation of a paranoid schizophrenic that Batman stopped. In real life, Heath Ledger, who played The Joker in a eerily psychotic way, died from an “accidental overdose of the anti-anxiety agents Valium and Xanax, the sleep aids Restoril and Unisom, and the painkillers OxyContin and hydrocodone (the active ingredient in Vicodin)”.

The highest drama is created by life or death situations. “Pop culture, such as the Batman comics and movies, provides an opportunity to think philosophically about issues and topics that parallel the real world.” Avoid the health problems of Gotham City if you can.

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.

Improve your Health and Enjoy your Life: The Engaging Messages of Medical Spam

Messages of health, happiness, and longevity. Who could resist?

When I peruse my spam folder, I am struck by the creatively crafted and enticing subject lines promising me doctor-approved help; that I can bypass doctors forever; that my doctor is hiding cures from me; or that I can buy a list of every doctor and dentist in the US. Of course, these messages are mixed in with those offering me new academic credentials or Rolex watches, or written in languages I can’t even identify. Interestingly, with the exception of creative misspellings of pharmaceuticals, the health spam tends to be spelled accurately, unlike the educational messages.

Here are some recent eye-catching subject lines:

1. Improve your health and enjoy your life!
2. Your last chance to become healthier
3. The latest developments in medical science
4. Relieve yourself from health problems
5. What They Don’t Want You to Know What it Does to Your Body!
6. 300,000 People die every year in USA of Obesity ….. Are you Next ???
7. Never have to see a doctor to get a prescription again
8. Get filled with health and gladness!
9. Stop suffering from diseases!
10. Dont let paim and ilness happen in your life.

I wonder how many people are enticed by this medical spam, bypassing their common sense. Clearly this is a problem with some documented cases of people who purchased online degrees, as described in Degrees by Mail: Look What You Can Buy for only $499. I especially worry about how medical spam might attract people with poor information literacy skills who are not healthy and want easy solutions.

Job Hunting? Think Twice about Revealing your Hobbies

If you are sending out resumes, or keeping one around just in case, think twice about having a personal section at the end that includes your hobbies. I read a friend’s resume who is job hunting and told her to remove her hobbies because it was easy to see how what she wrote could be misinterpreted and held against her by an employer. It was nothing exotic, just serious artistic accomplishments.

Listing hobbies on a resume is often promoted as a way to catch the eye of someone with a shared interest or stand out from other applicants. Since hobbies showcase your personality, they can add a personal touch or highlight some additional skills you have.

That all sounds good, but employers can read anything the wrong way:

If you list athletic activities, such as marathon runner, it makes you sound healthy and active but employers are concerned that your training schedule is more important than their needs.

If you list artistic pursuits, such as sculptor, they worry that you work only to support your artistic passion.

If you list volunteer activities, such as working in a homeless shelter, you sound like a wonderful person but scheduling conflicts may arise and your choice of organization might be different from those supported by the employer.

If you list activities revolving around children, such as soccer coach, you raise concerns about your priorities.

If your hobbies involve books, movies, music, or gardening, the reaction might be “So what, doesn’t everyone?” Unless you list karaoke asyour hobby, inducing fear of what will happen at the next company party.

I knew someone in school whose hobby was reading the dictionary. “Weird,” you might reasonably say. I saw his name years later as an award-winning crossword puzzle maker – but it’s a hobby that would raise eyebrows when applying for most jobs. What benefit is there to include these activities – and there may be a cost. Besides which, there may already be too much information about you online, according to the warnings about what current or potential employers learn from your Facebook profile or your tweets.

Redacting the hobbies from your resume may not be enough – think twice about revealing too much in your internet profiles. And then wait until the interview – or better yet the first day on the job – to reveal your non-professional inclinations.

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.

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

Why Ted Kennedy Isn’t Obsessively Searching the Internet

Sen. Ted Kennedy was diagnosed this week with a malignant tumor. I bet he is not online looking for answers right now. Why? Because the answers have been provided by some of the world’s experts. In fact, they are there for everyone to read in the Boston Globe and other newspapers, complete with graphics.

Some say health is the great equalizer. (Others call education, the internet, – you name it – the great equalizer.) Many studies have examined health disparities and looked at the impact of health insurance, ethnicity, gender, and other factors on the quality of health and health care.

Health disparities aside, anyone can become ill. Everyone’s hearts go out to Sen. Kennedy and his family at his diagnosis. But many people, given a devastating diagnosis – or even a minor one – turn to the internet for help.

Before the internet, people relied primarily on their doctors. Now they rely on their doctors and the internet. But do people use the internet because they want to or because they have to?

Most people do not have world-renowned experts chiming in on the best course of treatment. Even the graphics – I can only remember one time that a doctor drew a sketch for me.

My friend Maureen emailed me:

I certainly have used the internet for health information. Usually what I find scares the daylights out of me! Or it’s too general and simplistic- until I find the right sites. Since I’m such a worrier I always need to be careful in that regard because it can be addictive- just one more search!

Maureen, a physician’s daughter, uses the internet for herself and her family, as do many others, obsessively searching for answers. People like Maureen and me use the internet because we are not rich or famous enough to have teams of experts to treat us. Ultimately, no one wants to be ill and, if they are, they want the best expertise available.

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.

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.

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?

Three Reasons Why Travel Helps You to Get Your Work Done

Given that the length of a day can’t be extended, it is a challenge for many people to get their work done. This is especially true when the work in question requires concentration. Ironically, the office is often the worst environment for getting work done because of the multitude of distractions and interruptions. So here’s what to do: take a trip! Here are the reasons why:

1. You get things done in preparation for a trip so that you don’t have to think about them while away. The bills are paid, the children’s schedule is in someone else’s hands,… and you have everything with you you need. How refreshing – and mind-clearing.
2. You are in transition. While you are actually someplace at all times, the place you are in while traveling is inconsequential. Thus you don’t have to think about it. (Have you noticed how the monitors on trans-Atlantic flights are constantly reminding you where you are? It’s a great reason to travel first class: to have control over what you view – or don’t view.)
3. You have few distractions. I know someone who met her husband in the seat next to her on a plane, but, in general, most people I know ignore their traveling companions unless they are ones they selected themselves. Ellen Goodman, a syndicated columnist, wrote – in 1984! – about how terrible it was when planes first added phones: “Now even this refuge has been violated.” But most people don’t talk on the phone on planes and even trains have their quiet cars.

Agatha Christie captured the glamour of travel in her books (although some of her passengers did not arrive at the destination they intended, if you know what I mean). But few of the people in her books were working while traveling, with the notable exception of detecting. Irene McAra-McWilliam, who gave the opening plenary at CHI 2008 in Florence, in an interview for eLearn Magazine, said, “Many places are excellent spaces for thought” and mentioned train travel as one of her optimal work environments. I agree, and find the Amtrak’s Acela from Boston to New York the perfect place to work. I wonder if anyone has studied the impact of the ambient noise or rhythmic motion on thought processes?

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!

“The Name’s Bond. James Bond.”

I love James Bond movies. I have never read Ian Fleming’s novels or even thought much about him. I was therefore interested to read that the Imperial War Museum London recently launched an online exhibition exploring “the early life of Ian Fleming, his wartime career and work as a journalist and travel writer and how, as an author, he drew upon his own experiences to create the iconic character of James Bond that continues to have global appeal.” I am often hesitant to click on links, partially due to time constraints and partially due to some disappointing experiences with must-see websites, must-watch videos, and must-listen podcasts.

The virtual “sneak peek” exhibit used a gallery metaphor to depict some objects from the exhibit with audio explanations – complete with dozing guards. I didn’t find it particularly interesting or informative or even a good teaser for the actual exhibit. However, as an educational experience, it was successful in two ways. One was that, before giving up completely, I found some fascinating materials about Ian Fleming on the museum’s exhibition site. The other is that I read about Ian Fleming and about “For Your Eyes Only,” the exhibit name. Since I liked Casino Royale or any 007 movie with Sean Connery better, I read about other movies as well, including trivia, goofs, quotes, and the gadgets Q invented.

Suppose you were teaching a class and one of your students tactfully told you that your lecture was boring but that he or she spent hours researching the topic out of class. Would you ask for constructive criticism, be happy since you spurred self-directed learning, or say, as Bond did, “Well you can’t win them all”?

Uninterruptible Concentration and Why Donald Knuth Should be President

My latest mental mash-up is about email and the presidency. Donald Knuth does work that “takes long hours of studying and uninterruptible concentration” and thus chose to no longer use email. Now, if the White House had the same policy, then the White House CIO would not need to claim “that email messages from 2003 to 2005 either can’t be produced because they’re not missing, because the computers they were on have been destroyed, or because it’s too hard to find them.” Not only are tax dollars spent on controversies such as this, but government officials are spending time writing and reading emails instead of focusing on the country’s needs with uninterruptible concentration.

I don’t know what Knuth’s politics are, but his books are brilliant and I appreciate his stance on email. I spend too much time every day on email and, even then, it’s never enough. (Am I the only one who has ever started off an email with “Sorry I didn’t respond sooner but…”?)

Instead of “a chicken in every pot and a car in every garage“, Knuth can institute a moratorium on email. Benjamin Franklin said, “Time is money“, and Knuth’s platform can be “Email is time”. “Time is the only thing we have in our lives” and through email we allow strangers to take it away from us and destroy our concentration. How is this any different than a phone call from a telemarketer interrupting dinner (before the do not call registry)?