Wikis: Cautionary Tale 2.0
Everybody is talking about social networks, collective intelligence, wisdom of crowds, smartmobs, User Generated Content and other “2.0″ terms. It almost sounds like the only recipe to create the next big idea in the medical internet is to use a few of those contemporary terms to describe what your site provides, even if the site provides only simple community building tools.
Wikis and blogs are of particular significance because they offer the potential to rapidly create “social networks” and UGC with a minimal initial monetary investment. Not surprisingly there is a real explosion of medically oriented wikis and blogs.
A growing number of scientific and academic organizations, including universities and peer-reviewed scholarly publishers have started using wiki technology to see how UGC can fit in their business models and/or to verify the theory that UGC can improve the original publications over time.
2 years ago, with a grant from the Robert Wood Johnson Foundation ACOR setup the LO-wiki, a central resource for anyone interested in the research and the management issues of medical online communities. This was the first of the “Patient-Centered Wikis: Experiences Shared, Questions Answered Collectively”. We followed with a wiki version of the ePatients white paper. Since then, I am constantly listing new sites with potentially innovative uses of wikis to provide timely, relevant and constantly updated scientific information. And once a week I spend a few hours checking all the new entries in the list.
The following cautionary tale, based on the latest batch of participatory scientific publishing experiments shows how they can present both clear benefits and real dangers.
It’s Not Just about Healthcare…
All this talk about Health 2.0/ Web 2.0 and the wisdom of crowds has got me noticing things I probably would not have noticed before. For that reason I am directing readers to the following article by Craig Morris at truthout (http://www.truthout.org/issues_06/012908EB.shtml). It’s an interesting read about the environment, and alternative energy sources in and of itself. But there is more to it than that. In it, we are again reminded about the importance of communities and collective wisdom in every sector of our society. This is but one example completely outside of the health care sector. In the energy business, some countries are fostering local control, activism and (literally) power to the people instead of power to the corporations.
Medscape Editorial
Check out this video editorial by Dr. Danny Sands entitled “ePatients: Engaging Patients in Their Own Care.” (Note: sign-up is free for site access.)
Hey there, e-Patient Dave!
And welcome to “the movement” (his term not ours 
I love the transformation of your Blog from Patient Dave to e-Patient Dave and want to quote it here for our readers.
“… this looks to me like the Sixties motto “power to the people,” made real in the world, in a way that’s touching many many people and could be touching far more - even everyone.”
That’s what we’re all about!
Fellow cancer survivor,
Cheryl Greene
Women — You’ve Been comScored!
“Women More Likely to Turn to Internet than Friends or Family for Health Information” according to a January 22 comScore press release. Reading further you find out “The study was designed to help explain how women choose their birth control method … and ultimately whether their online activity influences their offline decisions.” In other words, what makes women decide where to spend their birth control dollars.
They suggest, “As the number of women using the Internet for health information increases, the importance of user-generated content (“UGC”) also becomes vital – providing women with the opportunity to engage in health conversations online. The comScore study evaluated the use and appeal of UGC – such as blogs, forums, or chatrooms – among women seeking birth control information online… These insights confirm the already popular industry trend toward more online health discussion.”
In their press release they don’t highlight the finding that 82 percent of the respondents also turned to medical professionals for information. And what about the 51 percent that discusses birth control options with family, friends, and their significant other? Why is it not surprising that “Through its proprietary technology, comScore measures what matters across a broad spectrum of behavior and attitudes. comScore analysts apply this deep knowledge of customers and competitors to help clients design powerful marketing strategies and tactics that deliver superior ROI.” So bottom line — comScore is recommending that pharma get on the Health 2.0 / UGC bandwagon because it’s a good way to market birth control to women.
If you add up all the numbers in the survey (82 percent, 60 percent, and 51 percent) it’s clear that most women in the study are consulting multiple sources. I’d like to think these women are the e-Patients. Being an e-Patient is much more than participating in a chat or a Blog — even this one. Women e-Patients may turn to discussion groups, chats, Blogs and other UGC to gather information before making a decision. They may also read books, talk to friends, their significant other, their doctors, and any number of other healthcare professionals. . In my opinion, this is where e-Patients differ from Health 2.0 users. It’s also what makes us hard to market to
New York Times and e-Patients
Check out Dr. Alan Greene’s guest expert Blog on NYTimes.com. He’s answering readers’ questions e-Patient style!
The WELL
Join the e-Patient Scholars for a conversation on The WELL.
Here’s a great quote:
“When the Internet industry is booming and investors are interested, we start focusing too much on the technology, because there are so many new technologies hoping to attract users and money. It seems to me, however, that what differentiates sites in this inherently social environment is not how innovative they are as technologies, but how well they support conversations and relationships.”
Jon Lebkowsky
Join us, add your comments, and pick our brains!
Two Views on e-Patients, and the Doctors who See Them
In November 2007, Scott Haig, MD, an orthopedic surgeon and medical columnist for TIME, wrote an article for the magazine called “When the Patient is a Googler”. He described a patient of his he called Susan, whom he felt was emblematic of patients who research important aspects of their own health issues (and background information about their doctors). Haig writes:
“Susan had chosen me because she had researched my education, read a paper I had written, determined my university affiliation and knew where I lived…
Every doctor knows patients like this. They’re called “brainsuckers.” By the time they come in, they’ve visited many other docs already — somehow unable to stick with any of them. They have many complaints, which rarely translate to hard findings on any objective tests. They talk a lot. I often wonder, while waiting for them to pause, if there are patients like this in poor, war-torn countries where the need for doctors is more dire.
…Susan had neither the trust of a nurse nor the teachability of an engineer. She would ignore no theory of any culture or any quack, regarding her very common brand of knee pain. On and on she went as I retreated further within.
Susan got me thinking about patients. Nurses are my favorites — they know our language and they’re used to putting their trust in doctors. And they laugh at my jokes. But engineers, as a class, are possibly the best patients. They’re logical and they’re accustomed to the concept of consultation — they’re interested in how the doctor thinks about their problem. They know how to use experts. If your orthopedist thinks about arthritis, for instance, in terms of friction between roughened joint surfaces, you should try to think about it, generally, in the same way.”
The core of his article seems to be that the favorite patients of this type of doctor are those who just trust them or those who at least have the decency to think in the same way the doctor does, who agree with the doctor for their own reasons.
In response, Kaiser pediatrician and writer Rahul K. Parikh, MD, penned “Is there a doctor in the mouse? Arrogant doctors criticize their patients who go online to research ailments. But they’re wrong. The best health sites are a boon to patients and doctors alike” this month at Salon.com. Dr. Parikh offers an inspiring look at how e-patients can help heal our healthcare system:
“The medical establishment, in fact, has taken way too much time to understand that the Internet is a disruptive innovation that has overturned the status quo. It has leveled the playing field between expert and novice — in this case, doctor and patient. While some doctors like Haig may find that challenge threatening to their status as an expert, the Web is now providing the kind of information doctors need to be aware of if we want to continue to be good at our job, and the kind of trends that can help patients be smarter and healthier.”
Like me, this pediatrician is happy when his patients are online:
Patients who, prior to a visit, consult information online can better share in the decision-making process with their doctor. Afterward, they can go online to find information that reinforces their decision or introduces them to viable alternatives.
Dr. Parikh urges physicians to incorporate the health internet into their practice routine:
Today, there are many accurate, high-quality health sites, and doctors should make it a standard practice to recommend them to each and every patient. Besides reducing the randomness of a Web search, this can reinforce a physician’s advice during a visit, which is especially helpful, as studies show that patients typically remember no more than half of what their doctor tells them.
Obviously, my perspective is similar to Dr. Parikh’s, and I appreciate his articulate response to the resistance that too many e-patients still encounter. Patients and doctors alike have much to learn as we embark on healthcare in the 21s century.
We live in a time of rapid tectonic shifts in what it means to be a doctor and what it means to be a patient. I’m not surprised that there are clashes of ideology and practice. Our labyrinthine, barnacle-encrusted healthcare system resists change. So do our social structures that have lasted for millennia.
But already many e-patients and many e-doctors are actively enjoying a new way of relating, rooted in mutual respect and open access to health information.
I believe encouraging and equipping patients to search for health information is central to being a good doctor in the 21st century.
E-health Reality Check
Press coverage of the Pew Internet Project’s recent report, “Information Searches That Solve Problems,” focused on how “libraries still matter” especially among young people.
One aspect that I think merits further attention is how people interact with various information sources when they are dealing with a serious illness or health concern.
Medical Googlers, Part 2
The New York Times health blog, The Well by Tara Parker-Pope, has an update about “Medical Googlers” that is worth a read.
white paper
e-Patients:
How They Can Help Us Heal Healthcare
