Must Waiting Be Inherent To Medical Care?

“By the time you see the doctor, you’re either dead or you’re better,” my mother-in-law told me. She had to have multiple tests, all with long waits to get the appointments and the results, before her health insurer would allow her to make an appointment with a specialist.

“Waiting is the bane of the medical system,” a former student, an R.N., concurred. Advances in medicine and technology have improved medical outcomes, but have often resulted in more waiting at a time when every other aspect of life is speeding up. Waiting is a systemic problem exacerbated by advances in medicine and by health care reform.

Some of the ways we wait:

1. Wait to see if the symptoms go away or get worse. We all struggle with these decisions: do we need to be seen about the fever, back pain, or rash? Sometimes we wait because of denial or hopelessness; sometimes because of the cost or availability of medical care. I make decisions about when I need to see the doctor by asking myself if, under the same circumstances, I would take one of my children to the doctor.
2. Wait to get an appointment scheduled. I’ve made appointments for a sick child by channeling an old friend who could be relentless: “That is not acceptable. I need an appointment today.” Obnoxious but it sometimes worked. The rest of the time, though, the period between making and having an appointment can feel very long.
3. Wait to get to the appointment. Doctors and hospitals are more abundant in Greater Boston, where I live, than in other places, although traffic and parking can be problematic. Melody Smith Jones described a man’s six hour commute to see a doctor.
4. Wait to be seen by the doctor. It isn’t called the waiting room for nothing. Dr. Atul Gawande wrote in The Checklist Manifesto about people in the waiting room getting irate when he was running two hours behind on a hectic day. Being irate – or anxious or bored – is unlikely to increase the quality of physician-patient communication.
5. Wait in the examining room. At least in a waiting room you are dressed. If it is cold and you are wearing a paper or cloth johnny, distractions don’t work as well and examining rooms have fewer than waiting rooms.
6. See the doctor. Nowadays, as my mother-in-law recounted, you have to wait for the doctor to review your records before even looking at you. I find it surprising that physician rating systems give equal weight to wait times as they do to “communicates” and “listens”, when the latter are so much more important.
7. Wait in the lab. The selection of magazines is skimpier. You may be reviewing what you were told not to eat or drink: will that cup of black coffee skew the results?
8. Wait for lab results. If there are any non-routine reasons for testing, this can be interminable. I leave a lab asking when results will be ready and then I call. A former student told me about using Harvard Vanguard’s MyHealth Online. She said, “I love getting the lab results immediately online but I can see how those without clinical training could be overwhelmed or confused by the data and how to interpret them.”
9. Wait for the doctor’s interpretation of lab results. Lab results can be hard to decipher without clinical training, as my student said above. Even when I know results are available and the doctor has seen them, it can take many phone calls to obtain the doctor’s message via the secretary. Asking the doctor follow-up questions takes even longer. These are waits with a cell phone never turned off so you don’t miss the call.
10. Loop. You think you’re done but you may need to see a specialist, get a second opinion, or have more tests. As my mother-in-law pointed out, this process can be controlled more by insurance companies than by doctors’ availability. Another type of waiting also takes place now: waiting to get better. A friend bemoaned how she “couldn’t wait” for her black eye resulting from a fall to clear up because she was tired of people staring at her.

Waiting Reduction

We all have to wait. Waiting is an inherent part of being ill. But here are some ways to reduce wait time or lessen the impact:

1. Schedule tests and doctor’s appointments together. My exercise teacher told me about her husband’s hospital visit that started with a CT scan and ended with a doctor’s appointment to discuss the results. With no problems detected and a year until they next visit, they both said what a relief it was to get it over with quickly. Scheduling appointments together reduced both waiting time and anxiety, although not all tests results can be interpreted this quickly. Personally I find it is much easier to deal with a diagnosis than fear of what a symptom could mean.
2. Avoid unnecessary appointments through email or phone. A Dutch friend, whose sister and aunt are doctors, recounted instances when she was able to get quick answers by email or phone to questions, be reassured, and save a lot of time and effort. One instance: “Once I was on holiday in Greece and sent my sister a picture when my eye was infected. She told me to buy drops and that it would go away.” Since most people do not have convenient relatives with medical degrees to talk to, being able to easily reach a doctor or nurse by email could provide a way to get a quick answer. Dr. Danny Sands has long been a proponent of physician-patient email, but most practices do not support it. I can easily see the benefits because email forces you to describe a situation concisely and images can be attached as appropriate.
3. Meet Dr. Skype. Melody Smith Jones posed the question, “Can telehealth be used to end this man’s 6 hour commute by providing him access to the specialists he requires? What barriers and challenges still lay before us to make this a reality?” Dr. Joseph Kvedar answers this, saying “We have to move beyond the antiquated notion that you must visit a physical space and talk real-time with your health care provider to fulfill the process of care.  Seamless communication between you the patient and the system (including your provider but also your health information) will allow us to cut through what is a falsely complex and inefficient system to achieve more efficiency, less waiting and less anxiety.”
4. Ask the expert. Self-proclaimed experts and community-verified experts provide advice in many sites like Yahoo! Answers. Recently there has been a proliferation of sites supporting health Q&A. A new entry, HealthTap, promotes that it has “Answers from 5,000 U.S. licensed physicians. No waiting room.” I tried it and questioned why I needed to answer so many personal questions during the registration process. Once registered, I started to ask a question but was stumped by how much context to provide. In general one of the things I like about Ask the Expert is the ability to browse other people’s questions – sometimes you learn more from questions you never would have thought to ask – and answers.
5. Use clinics for non-urgent care. I had a friend who believed that it was important to see the same doctor because he or she could notice changes that might not otherwise be detected. While I agree, the Minute Clinic (note the name) model can potentially reduce some of the use of doctors for non-urgent care.
6. Enhance health literacy skills. With 80% of US internet users looking online for health information, better health literacy skills are needed to guide the strategies used to seek, select, and use online health information. This is rarely taught in schools or by doctors, and is increasingly necessary because of the lower barriers with social media: it is easier than ever to promote herbal supplements and bad advice.
7. Make waiting fun – or at least less stressful. Deirdre Walsh, a health coach and a former student, said, “The pain and frustration of endless waiting seems needlessly cruel. But it’s often the emotional toll of fear and uncertainty that does the most damage from the negative effects of stress chemicals on energy, sleep and mood.  If waiting is inevitable, there are self-awareness exercises that restore calm, power, and the sense of control. ” Games and gamification have potential as well: a version of “Wait, wait… don’t tell me!” for the waiting room?
8. Is there an app for that? Not that I know of, but social media is being used by public health departments to post flu clinic waits and by emergency rooms to post wait times. What about for doctor’s visits? Dr. Richard Besser said, “You shouldn’t have to wait more than 15 minutes unless there’s an emergency.  Social media might be a great place for people to share waiting times.” Along those lines, I read about, but have not tried, WaitChecker, a web-based service to alert patients to appointment delays.
9. Set expectations. The metaphor Trisha Torrey uses is “when you arrive at a busy restaurant on a Friday night, what’s your question to the host?  How long is the wait?  It’s only fair that providers manage our expectations about wait times, too.” It is easier to be patient with expectations set, not just for the length of a wait but the course of a disease.
10. Use waiting time on task. A student once told me that she had a rash when pregnant and assumed it was unrelated to her pregnancy. She searched for information on her iPhone while in the waiting room, decided it might be related after all, and asked her doctor, who treated it. She saved another doctor’s appointment. What if all waiting rooms provided mobile devices? Or promoted prevention with education, exercises, and healthy snacks. Talk about captive audiences.

Quality of Health Care Is Paramount

It is important to maintain perspective: quality of health care is paramount. Everyone wants the best care possible and sometimes waiting is unavoidable. With no health advantages to waiting, put , as Dr. Ted Eytan said, “the patients’ cost of care, which includes the time they spend waiting, into the equation. Everything follows from that.” There is no reason to accept that it’s part of our health system, but, instead to work to reduce waiting, and to reduce the impact of waiting.

The Art of Running a Twitter Chat: Lessons from Dr. Richard Besser and ABC News

I learned that Dr. Besser runs a weekly Twitter chat on Twitter, of course: @drrichardbesser: Reminder: Twitter chat today #abcDrBchat 1PM ET Are you prepared for a disaster? Let’s talk about it. @ABC

For the uninitiated, this translates to: Dr. Richard Besser, chief health and medical editor of ABC News and former acting director of the CDC, is running a Twitter chat about disaster preparation.

I participated in the chat because disaster preparedness was on my mind after being interviewed earlier in the day about how social media is being used in Japan and because I follow Dr. Besser and wanted to see how he conducted his chat. I participate in the weekly #hcsm chat when I can and lurk in others, so it’s fascinating to compare moderation techniques. The chat, by the way, was lively, informative, and well-attended. My personal highlight was when Dr. Besser retweeted me and then @ABC retweeted him!

I was in my office at Tufts School of Medicine and the door was open, so colleagues came by and enjoyed looking over my shoulder (they fell in the uninitiated category and were uniformly impressed that Dr. Besser wasn’t). After the chat ended, I contacted Dan Childs, aka DanChildsABC, who heads the Health section of ABCNews.com, to ask how Dr. Besser’s weekly chat started, how it is conducted, and what happens after the hour is over.

Lisa: Who had the idea to start the weekly chat with Dr. Besser? 
Dan: This was actually an idea that was hatched during a discussion between a few of us on the Health team and Niketa Patel, the Social Media Producer for ABCNews.com. We had wanted to do something special that would allow Dr. Besser to connect more directly to his audience through social media, and Niketa offered up this idea. This is the first such effort for a correspondent here at ABC News, so we’re the trailblazers in a way. Or the guinea pigs, depending on how you look at it. Trailblazing guinea pigs.
 
Lisa: Did he like the idea? 
Dan: Dr. Besser loved the idea. 
 
Lisa: This was my first chat with Dr. Besser but I see there is another next week. When did they start? 
Dan: Today was our fourth Twitter chat so far. We started about a month ago.
 
Lisa: How are topics selected?
Dan: Generally, the chat crew will share ideas either in a meeting or online. As with the chat today about disaster preparedness, we try to pick topics that are in the news and, therefore, within the public consciousness. Last week, Dr. Besser tweeted from Africa on issues of global health in the developing countries there. We try to pick something that is relevant, but also gives participants a feeling of going beyond the headlines to explore how these current issues are relevant to them.
 
Lisa: I was very impressed that Dr. Besser was supported by @LaraSalaABCNews, @BigCityRig, @CarrieHalperin, and @DanChildsABC. What actually happens during the chat?
Dan: Several members of the chat crew set up laptops in Dr. Besser’s office, while others of us participate from our offices and desks. Certain members of the chat crew will be responsible for certain aspects of the chat; one may be tasked with presenting questions during the chat, while another will be in charge of scouring ABCNews.com for articles that are relevant to the discussion at hand and posting those links. It is also usually helpful to have one or two people navigating various external sources on the web to ensure that all tweets we put out are based on the most current and reliable information available.
 
Lisa: What happens after the chat to review how it went? Who is there and what is the discussion? Are there noticeable changes the following week?
Dan: This is generally a discussion that takes place in the course of our Health team morning meetings, and then more informally throughout the day as we think of the things we learned from the previous chat session. What is great about this whole process is that the product has evolved pretty much constantly since its inception – every time we do this, we do at least one or two things a little bit differently. Sometimes these adjustments are small ones, probably barely noticeable to our audiences. But then there are larger changes that really seem to have an impact. In our most recent session, for example, we were able to coordinate with ABCNews.com to have the tweets appear in real-time in a text box on the Home Page and the Health page of the website. So when something like that happens, where the rest of the eyes in the network can see what you’re doing and how you’re interacting with the audience, that’s pretty exciting.

End of Life Decision Making

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

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

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

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

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

How and Why Massachusetts General Hospital (MGH) Uses Twitter to Reach Patients

Mike Morrison tweets for Massachusetts General Hospital as @MassGeneralNews and for Massachusetts General Hospital for Children as @MGHfC. I met Mike when I tweeted about the Benson-Henry Institute for Mind-Body Medicine including @MassGeneralNews in my tweet and Mike immediately followed me. I contacted him to find out what his strategy is for Twitter use and what the benefits have been:

Lisa: Let’s start with the name: Locally we say MGH or Mass General and even the website uses all variations of the hospital name. How did you decide what to use for Twitter to be recognizable and searchable to locals and everyone else?

Mike: The name was a tough decision. MGH was definitely an option but outside of Massachusetts it doesn’t resonate. Beyond that it was a matter of pragmatism. Twitter limited the number of characters for our name and we definitely wanted “News” in the title so after that is was pretty much a foregone conclusion.

Lisa: Do you know anything about which MGH employees – or patients – are on Twitter?

Mike: We usually find out about patients, doctors, and staff on Twitter by seeing their tweets. Each time we’re followed by an account I like to take a good look at the profile to see if they are in one of those categories because I want to continue building that sense of community. We also occasionally remind our own staff about our presence through our internal weekly newsletter.

Lisa: Tell me about your background: what did you do before this and how did you learn to use social media?

Mike: After graduating from the University of Maine in 2005, I completed a post-college PR/Marketing internship at North Shore Medical Center in Salem, MA, close to my hometown. After 3 months I was hired at the Museum of Science (MOS) in Boston as a Publicist in the Media Relations department. I worked at the MOS for more than 3.5 years and loved every minute. Though I had originally joined Facebook in college, it was at MOS that I began to see its full potential as a professional communications tool. Along with my colleagues, I worked to launch both a Facebook “fan” page, as they called it before the most recent “like” change, as well a personal page for Cliff, the Museum’s triceratops fossil. I also helped to launch both the YouTube channel and the @MuseumOfScience Twitter page. The jump to social media communication, though conceptual at first, became a reality for us when the media industry began to severely cut staff. Many of those cuts came from Arts and Entertainment writers and reporters who helped us garner much of our publicity. It became quite clear to us that utilizing social media was an important practice.

Lisa: Explain more about why it was important and also how social media for a museum compares to a hospital?

Mike: Social media is important because it allowed us to connect with passionate Museum fans and communicate our news that, while perhaps not ‘big” enough for traditional press to cover, was important to them. We were also able to have a lot of fun. We ran contests for our Facebook fans and Twitter followers. The staff at MOS continue to come up with even better ideas for engaging fans. In terms of a comparison, both hospitals and museums need to listen and interact. At the hospital we have to ensure that we apply our high standards of patient privacy to our social media practice. Though I didn’t realize it before I arrived, MGH’s world-class research programs ensure that science is very much part of what we do. Some of the most covered MGH stories come from our ground breaking research.

Lisa: How long have you been at MGH, what are your roles, and how did you get this position?

Mike: I arrived in October of 2009. I received an email from a friend letting me know they had noticed the MGH position and thought I should take a look. At its most basic level, my job entails the traditional proactive and reactive media relations (pitching stories/pairing our experts with media). I also oversee social media for the Public Affairs department and do general writing assignments like web stories or annual report stories. Two examples are http://www.massgeneral.org/about/newsarticle.aspx?id=2462 and http://www.massgeneral.org/about/newsarticle.aspx?id=2377.

Lisa: What do you do specifically in this role?

Mike: While at MOS, I would say 80% of my job was proactive and 20% reactive, whereas as now that number is reversed. We respond to hundreds of media calls each year and also operate a live television studio to accommodate national and international broadcast requests. We in Public Affairs work on a beat system with staffers covering different areas of the hospital. Mine include Global Health, Neurology, Neurosurgery, Imaging, and Orthopedics. The other part of what I do – and a major reason why I was hired – was to help launch and integrate social media communications. Luckily my superiors saw the importance of social media before I got here and when the opportunity came to fill a position they made social media a priority. So to that end, I launched @MassGeneralNews on Twitter last February and hope to hit 1,000 followers by the end of this year. I also launched our YouTube channel (www.YouTube.com/massgeneralhospital).

Lisa: Does MGH have a Facebook presence as well?

Mike: Yes, our colleagues in the development office do a great job: http://www.facebook.com/#!/massgeneral , we have a really nice collaboration. Recently, some colleagues and I did launch a profile page in order to communicate bicentennial (we turn 200 in 2011) and history info from the hospital. The profile belongs to Padihershef, a literal mummy who resides in the Ether Dome: http://www.facebook.com/#!/MGHPadi

Lisa: How much time do you spend on the average day?

Mike: Assuming my day isn’t a crazy media day with a major event, I generally work 8:30-5:00 with 60-70% of that time being spent on media calls and the vast majority of the remaining time spent on social media (practice, monitoring, and self-education).

Lisa: What happens with Twitter when you are off duty – do you ever check nights or weekends? Mike: When it comes to Twitter I’m never off duty. While it’s not required for me to check on weekends, I absolutely do. While that probably comes more from a personal desire to grow the presence and not an expressed mandate, I also know the conversation never stops and I like to keep up on it. Occasionally I “unplug.”

Lisa: What oversight is there?

Mike: I’m fortunate to work with superiors and colleagues who “get it.” Though our social media presence is monitored by the leaders of our department, we have a decent amount of leeway.

Lisa: Do you get physicians and other staff at MGH involved, for instance feeding information to you to tweet?

Mike: Often we are approached by different groups in the hospital about the use of social media to promote their efforts. We do in fact work with doctors and administrators from various departments to add their content to our platforms whenever possible and ask that they send us current interesting content.  For example we were approached by an extremely talented group of researchers from our Emergency Department who created a great free app for the iPhone, which lets users find the closest emergency room to their location anywhere in the United States. Our strategy here was to create this YouTube video and then pitch to bloggers encouraging them to use our embed code for their stories. We got great a great response on this as it was posted to Boston.com and Wired.com’s Geek Dad Blog. Although it’s tough to get publicity among a sea of apps, our video allowed us to provide more content for bloggers and increased our chances of getting attention. Even if we didn’t have the pitching success we did, we were able to tweet the video and the link to download, as well as post to our Facebook page. It was a great combination of traditional pitching, content creation, and social media.

Lisa: Does MGH have a social media policy?

Mike: MGH does have a social media policy which helps to provide clarity for our employees and audiences for social media interaction with MGH, or on behalf of MGH.

Lisa: What is the ROI – is MGH doing this because everyone else is or because they see this as essential to their mission, and how do you know you’ve been successful:

Mike: For us, it was easier to think of social media as an important tool we can use to accomplish the goals we already have. We are more of a news/PR office and not marketing so I’m more concerned with communicating and sharing stories or useful information and less about bottom line. Although that’s probably a little shortsighted of me, it’s easier to get started when you already have the goals and the content, and think of social media as a vehicle for both. While I think ROI is important, I’m a true believer that if your reputation is solid you’re going to get the business anyway. To MGH, social media is essential to our mission. Our mission (although I’m not quoting) is to help people. If we know people are looking for help through social media channels, we should be there. For me, it’s like us not having a website or telephone: how can we help if we’re not using the same technology as our patients?

Lisa: How much monitoring do you do of MGH’s online presence and how (obviously you saw my tweet!)?

Mike: I monitor Twitter constantly. I have searches set up via tweetdeck for our Twitter handle, hospital name, and several of its variations. While I don’t log any of the info in any kind of official report, I do respond to and inform folks we work with about any tweets or communications that could indicate a wide-spread issue that warrants a response. Also, if time allows, I do some simple Google searches (blogs, news, etc.) just to see what’s out there.

Lisa: What are specific strategies you use to follow, get followed, tweet, and get retweeted?

Mike: First off, the tweet is king. I try to always offer interesting content, or at least content that is a bit more humanizing and takes away the mystique of a huge faceless organization. Beyond that I try to slowly follow people who are tweeting about us or healthcare in general. I find using hash tags to file my tweets by medical topic often results in followers because people searching that tag are usually the most passionate. Also doing simple things like adding social media icons to my email (as long as outlook is behaving) and putting information about our Twitter handle in the weekly employee newsletter helps. Most importantly, I build followers by engaging. For me it would be easy to view Twitter as a one-way source, but MGH needs to be retweeting and asking questions to develop a truly valuable follower base.  Also, our breaking scientific research news is probably our most retweeted.

Lisa: Do you compare what you are doing to other hospitals or any other organizations?

Mike: I definitely like to see what other hospitals are doing with social media. Any great organization keeps up on industry trends and I think lots of hospitals across Boston and the country are being really creative. It’s also a great benefit to attend conferences with folks at other hospitals because we trade ideas and tips. I think that’s what I like most about social media: the community spirit.

Lisa: For someone starting out in a similar role or wanting to improve a hospital’s online presence, what are your 5 pieces of advice?

Mike:

1. Content. If you don’t have good content, you have nothing. Obviously this isn’t my idea but I believe it’s the gold standard of online communications. Not offering good content would be like opening a YouTube page to host your TV commercials…snooze……
2. Commit. Never use social media “cause everyone else is doing it.” Once you have an idea of your content, make sure you commit the time or allow your employees to commit to learning and practicing it. Even if it only takes a minute to tweet something, you need to be looking at Twitter constantly. At any other job, searching YouTube channels may be grounds for a conversation with your manager, for me it’s a matter of researching best practices and keeping up on trends.
3. Culture. In order to become involved in social media, you have to understand the culture. If you ever friended your parents on Facebook, you get my point. When starting out, just listen. This is especially true with Twitter. For example, someone who doesn’t understand the Twitter culture might find it odd for MGH to retweet a “competing” hospital who just won an award for a service we offer. But the Twitter audience is completely comfortable with this. At the end of the day it’s about standing on your own work, your own reputation.
4. Put yourself in your audience’s shoes. For us, it’s patients. When I think about good content, I try to think about a person who has just learned that they or a family member has been diagnosed with an illness. What they want is to get the critical information quickly. What they don’t want are slick commercials, pop up ads, or a link to a phone number with no information.
5. Be human. How many times do we hear about robo customer service? Or how some large organization seems like a monolith that doesn’t listen? Social media puts the power back in the consumer’s hands and it’s important to engage in two-way conversation. When people feel connected to your organization they’ll work with you. Even if they have a negative experience, they’ll return as long as they’ve been heard.

How Carolyn Kingston Used the Internet Before and After Hip Replacement Surgery

Diana Cole told me, “The internet saved my life,” and recounted a story about using the internet to identify a bat bite and learn about rabies in bats, leading to an emergency room trip. She later introduced me to her sister, Carolyn Kingston, who attributed her successful outcome from hip replacement surgery to her use of the internet. I asked Carolyn about her general use of the internet for health, her specific use for her surgery, and the blog she started to record her surgery and recovery.

Lisa: When did you start using the internet for health information and why?

Carolyn: I’ve been using the internet for health information for years, mostly to supplement and clarify information I get from my doctor. For example, as a person who has had chronic colitis for many years, I explored a number of sites searching for alternative treatments that would help cut down or eliminate some of the strong medications used in traditional medicine. I found a book online with a holistic dietary approach, which I followed during flare-ups for a month or two at a time for several years with limited success. Ulcerative colitis is tricky because up till now doctors have no idea what causes it.

Lisa: Do you and Diana discuss your respective internet use?

Carolyn: Diana and I often discuss and share information about use of the internet for health related issues. Her experience with the bat bite is an example. My health-related searches on the internet are usually very targeted, and directed toward answering a specific question rather than broad, generalized browsing.

Lisa: What led up to the hip replacement surgery Diana told me about?

Carolyn: I first noticed discomfort in my right hip about 8 years ago. In the last few years X-rays and an MRI showed increased deterioration of the cartilage in the hip joint and an increasing narrowing of the space between the ball and socket of the hip – typical of degenerative osteoarthritis. The time to have hip surgery is determined by how it feels, not how it looks, so it is largely the patient’s decision. With regular low impact exercising, such as swimming, walking, yoga, and tai chi, and herbal remedies, such as Glucosamine Chondroitin and fish oil, I managed to keep going pretty comfortably until the last few months. Even then it was not as much chronic pain but lack of mobility and the ability to enjoy exercising that was the impetus to schedule the surgery.

Lisa: At what point did you start searching online?

Carolyn: In January 2010, right after making the appointment for surgery on April 7. I’d seen my orthopedic surgeon for the second time in December, looking for a medication stronger than Naproxen and Tylenol. He prescribed Tramadol and we discussed whether to have the surgery now. Basically it was left up to me – a wait and see how it goes situation. In my first appointment with him about a year before he described in detail the advantages of the newer anterior approach to hip replacement, that the entry was more toward the front of the hip resulting in less bleeding, no cutting of muscles, and faster recovery time. In addition titanium is now used for most of the replacements, so it lasts longer, up to 25-30 years.

Lisa: What information were you looking for?

Carolyn: My first internet search was to find out more about “anterior hip replacement” and there was lots of information out there, including medical websites describing all the advantages and testimonial blogs by patients. I found few negative testimonials about this approach to hip surgery. What I did not use the internet for was to look for alternatives to surgery, and there were many ads on sites I visited claiming various ways to avoid hip replacement. I also did not research surgeons online because I was fortunate to have an excellent surgeon whom I liked, as well as the positive testimony of a friend who’d had a very successful result with the same surgeon several months before.

Lisa: Diana told me that you learned things online that led to a good outcome: what were they and could you have learned them in other ways?

Carolyn: What I learned online was very helpful both pre- and post-surgery. I found sites that had lists of pre-op exercises, which I printed out and began doing faithfully 6 weeks before the surgery. I found checklists of how to prepare your home for post-op recovery. I searched Amazon for books and ordered two, plus a meditation tape on preparing for surgery recommended by my therapist. I could have found out these things through my health plan, but this was efficient and didn’t involve making an appointment. To satisfy my need for information I ordered online the 2010 version of John Hopkins paper on Arthritis and set a “Google Alert” on current media articles on hip replacements. Some of this information was useful for the short speech I gave in March to my local Toastmasters Club on “Making Medical Decisions.” Post-surgery I felt ready to watch a step-by-step video of how this particular surgery is performed. I was also interested in how long it would be to recover full muscle strength in the muscles of my right leg.

Lisa: Did you look for specialized information, such as concerns you had as a singer? Were these searches successful?

Carolyn: I googled the length of time post-surgical effects of general anesthesia and the effects of intubation on the singing voice. On that issue I did not find any helpful information.

Lisa: How has your experience influenced your attitude toward using the internet?

Carolyn: My attitude toward using the internet is very positive. I use it to educate myself and to find reassurance, but not for self-intervention. I am very wary of sites that make claims to heal you in X months or days. The internet is an amazing resource which I use daily for one thing or another and I am grateful for its existence.

Lisa: I saw the blog you started, Becoming Hip. Can you tell me why you started it and why you didn’t continue it? Have you read other health related blogs and, if so, did you find them helpful?

Carolyn: I started my blog partly to learn how to set one up but primarily to share my feelings and thoughts day-to-day about my upcoming surgery with friends and family. It was also a way to remember my mother who died last summer and who had a total of three hip replacement surgeries, the first in 1978. In those days the prosthesis didn’t last as long, necessitating a re-do of her first one 17 years later.

Lisa: Why you didn’t continue it?

Carolyn: Somehow I got in the habit of writing my entries longhand (something I am used to doing in my journal) and never switched over to writing on the computer. Post surgery I wrote mostly to record the rehabilitation progress I was making which will be useful in the likely event I have the other hip replaced. Your question, however, has prompted me to transcribe what I wrote over the last 6 months and I am posting them bit-by-bit on my blog.

Lisa: Have you read other health-related blogs, how did you find them, and did you find them helpful?

Carolyn: I did read a number of other blogs and found them of varying usefulness. Some were way too self indulgent, others were very informative and encouraging. Recently I was concerned about muscle tightness in my operated leg so I Googled “muscle tightness post hip replacement” and found a very helpful entry on an Orthopedic website. It re-assured me that muscle tightness often takes several months to resolve.

Lisa: Did you – or do you still – follow any of these blogs regularly?

Carolyn: No, I don’t follow any blogs regularly. I usually just Google a specific question.

Lisa: Did you show your blog or journal to your doctor? Did you talk to your doctor about your internet searches or ask for recommendations of websites?

Carolyn: No, I didn’t.

Lisa: What advice do you have for someone in your situation based on these experiences, both your internet research and your use of a journal and blog?

Carolyn: If you are a person who likes to have a full understanding of what you will be going through, the internet is a great resource. It can’t replace personal conversations with your doctor of others on your support team but can give you more understanding and greater peace of mind.

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.



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.

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.”

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.

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.)

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.”

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.

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.

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?

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.

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?

The Democratization of Health Knowledge by Steve Denning, Guest Contributor

Steve Denning wrote previously about The democratization of knowledge: anyone can know anything:

“This phenomenon is particularly notable in the spontaneous formation of global communities of interest in the field of medical problems. Patients who were once at the mercy of doctors who had unique access to esoteric medical knowledge now find themselves able to contact other doctors and patients and explore their particular subject, gather new data, discover new leads for treatment, and learn how to cope with side effects. The emerging communities are global in nature. A patient in the US may be able to learn from a doctor in China or a suffering patient in Argentina and vice versa. The sufferers of rare diseases, where perhaps only a few victims exist around the world, can now make contact with each other and share experiences…”

I had an email discussion with Steve yesterday, in which he provided the following update on the Democratization of Health Knowledge:

Some more recent themes would be:

• the rising resentment of some “experts” to the re-emergence of amateur knowledge, and a certain degree of unwarranted elitism involved in such “expert” attitudes. This resentment seems most marked in fields where the expert’s claim to superior expertise is most shaky e.g. political journalists.
• the reluctance of some “experts” to share if they feel that the knowledge risks being misused or abused.
• the gratitude of other “experts” who often see the amateurs as helpful partners.
• the risk that a little knowledge is a dangerous thing. Alexander Pope: “Drink deep or taste not at all from the Pierian spring.” (That risk is however not limited to amateurs. The radical specialization of medicine means that someone can be an expert in a tiny field, but a real ignoramus in areas of their expertise and make egregious blunders.)
• the reduction of such risk in cases where people have taken on the task of lifelong learning. They become adept at getting up to speed in a completely new field and remain curious, open-minded, imaginative, and rigorous in their exploration of a new field of knowledge. This is important both for amateurs and experts. Atul Gawande’s books document some of these issues in the medical field.

My more recent work has tended to move towards the area of things that are already very well known but are not acted on: what can be done about this?

The irony is that the larger knowledge problem since time immemorial has always been one of demand for knowledge, rather than one of supply of knowledge. Unless this is addressed, increased supply of knowledge doesn’t change things all that much. We don’t need a lot of esoteric web research to know that diet, exercise, smoking, or substance abuse are critical determinants of health and well-being. Yet how many people fail to act on this knowledge?

In organizations, people often know all too well what needs to be done, but often they can’t get others to listen and act. (In the medical field, you don’t need to be a genius to see that the overall cost-effectiveness of the US health system is far from optimal. So why hasn’t change happened?) My work is now aimed mainly at helping people overcome resistance to obviously needed change. I’ve spoken on occasion at medical conferences and discussed the issue with dentists.

I’m also working now on what’s involved in getting people working together at high levels of effectiveness, in high performance teams, networks, communities, and even political movements on a large scale or families and marriages at the opposite end of the spectrum. Within these “hot spots” of collaboration, knowledge transfer happens a lot more rapidly. I’m working on what’s involved in establishing and sustaining those environments.

The Democratization of Medical Knowledge

Marcus Welby, MD is an anachronism. The family doctor who pays house calls no longer exists except for some anachronists or doctors working in a few specific situations. The show, which ran from 1969-1976, predates the web. Hence Marcus Welby and his assistant probably got most of their medical updates from their monthly JAMA.

The amount of medical knowledge that exists and the amount that medical professionals need to know is constantly growing. Medical literature doubles every 19 years and, for AIDs, every 22 months, according to Tonya Hongsermeier, MD.

How can anyone possibly stay current? This is especially important because of the criticality of the information, not just the amount. As Tonya points out, doctors can be aided by tools that assist them, for example, alerting them to possible negative interactions between medications and other medical risks. Initiatives to codify knowledge and increase patient safety are taking place at Partners Healthcare.

Patients, who had limited access to medical knowledge in Marcus Welby’s days, now have a wealth of information available online – in fact, can access most of what physicians read. However, patients generally lack the basic knowledge and frameworks to understand and make sense of this abundance of readily accessible knowledge and, even more importantly, how to apply it. This is primarily due to lack of medical training and poor health literacy.

This democratization of medical knowledge, according to Larry Prusak, is a double-edged sword. Doctors struggle to stay on top of advances and, at the same time, patients increasingly try to acquire medical knowledge about their own or their loved one’s health. The disconnect between patients and doctors can be attributed in part to this democratization, which has changed the relationships between patients and their providers. The notion of empowered patients is one few could argue with; however an important component of expertise is knowing what you don’t know, knowing what to ignore, and knowing what is important. “There’s so much information (as well as misinformation) in medicine — and, yes, a lot of it can be Googled — that one major responsibility of an expert is to know what to ignore,” but many patients, understandably, lack that expertise as well as the necessary detachment. In fact, even doctors don’t treat themselves.

Not to digress, but I wrote about health and media recently and was interested that Marcus Welby, MD had an episode that focused on the diagnoses of breast cancer in two women, aired when “the wives of two public political figures” had been diagnosed with breast cancer. “The most motivational moment of this episode is James Brolin’s emerging from character to talk about diagnostic and early-detection tools for breast cancer. Such is the hallmark of television that [it] is not only entertaining but informative.” (This also goes to show the amazing information you can find on the internet when you aren’t even looking for it.)

The Disconnect Between Patients and Doctors

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

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

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

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

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

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

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

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

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

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

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

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

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

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

By participating in this interactive discussion you will learn:

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

If people don’t listen to their doctors, who do they listen to?

A WSJ Online/Harris Interactive Health-Care Poll found that a majority of U.S. adults believe that medical providers over-treat or under-treat their medical conditions. While sometimes this leads to getting a second opinion, other times it leads to not filling a prescription or getting a diagnostic test. The Kaiser Women’s Health Survey found that 22% of women “expressed concerns about the quality of care they got from their physicians or health care providers, compared to 17% of men. This issue was a particular problem for women in fair or poor health (40%).” The nurse practitioner in my doctor’s office once told me that more people take the advice of a stranger in the supermarket check-out line than her advice. There are many efforts to increase the number of people with health insurance, but the availability of affordable professional expertise does not necessarily mean that advice is taken.

I gave a keynote address on Online Communities: Innovative Notions of Expertise and Peer Learning, and started my talk by asking if I should use Weight Watchers or Atkins to lose 10 pounds. Saul Carliner, who was prepared to be a plant in the audience if no one else answered immediately, gave a compelling argument for the long term benefits of Weight Watchers. I then asked who agreed with him, and almost everyone did. One of the few people who hadn’t raised her hand said that diet and exercise need to be tightly coupled, but we agreed that she was only enhancing Saul’s response. I pointed out that we had (1) an opinion from one (somewhat anonymous) person and (2) the wisdom of crowds agreeing with him. I then asked how Saul’s advice would be looked at if (3) we knew that he had successfully lost and kept off weight or (4) we knew that he had a professional experience as a nutritionist. I went on to give a corresponding example on Amazon.com of how book reviews can fit into these categories. However, making a book selection has little cost, while health choices can have enormous consequences.

In What Doctors Don’t Know (Almost Everything), Kevin Paterson writes, “From the first day in the cadaver room and on, every medical student is drilled with this truism: ‘Medicine is both an art and a science.'” He goes on to write that “intuition is certainly an indispensable part of medicine. The body is so complex, and the ways it might go wrong so varied, that in the middle of the night, standing next to some fresh catastrophe, a doctor sometimes needs to generalize and to reduce very complicated problems to first principles. It is simply not possible to be rigorously intellectual and consult the available medical data about every single thing, all the time.”

Even if doctors don’t know everything, they know a lot. But if people don’t listen to their doctors, who do they listen to and are they receiving sound advice?