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"Expert Driver" Interview:
Medical Knowledge as a Social Process: An Interview with John Lester
Editor's Note: Larry Weed once advised me that to understand the full potential of a new technology, we must observe it in the hands of its most expert users. "If you want to see what that racy new Jaguar can do, you don't put John Q. Public behind the steering wheel," he explained. "You look for expert drivers."] John Lester is director of information technology at the Department of Neurology, Massachusetts General Hospital and a research associate at Harvard Medical School. He has come up with a key Information Age insight I've come to think of as Lester's Law: "Medical knowledge is a social process: The conversations that occur around artifactual data are always more important than the data themselves."
TF: John, as far as I know, the two largest health-related online support communities are the Association of Cancer Online Resources (ACOR.org), for cancer, and your site, BrainTalk.org, for neurological conditions.
JL: Yes, I think that's true.
TF: There are some technical differences between the two-ACOR groups operate via mailing lists while the BrainTalk groups use web-based bulletin boards and chat rooms. But the most intriguing difference for me is that while Gilles Frydman runs ACOR out of an artist's loft in New York City, you run yours out of Massachusetts General Hospital (MGH). How did that happen?
JL: In 1994, Dr. Anne Young, the Chief of Neurology at MGH, invited me to join her department as Information Systems Director. And part of my job description was to find innovative ways to use information technology in neurology. So I started poking around online and soon discovered that thousands of patients and family caregivers were using the Internet to communicate with each other and to share experiences and support in online support communities. These electronic groups were much more complex and powerful than face-to-face groups, yet many didn't have good online "homes" or ways of finding one another. I thought we might be able to help these communities grow by creating a centralized "home" for groups that focused on neurological conditions. That was the start of the BrainTalk Communities.
TF: How many members do you have-and how many communities?
JL: BrainTalk.org has about 46,000 registered members (people who post messages) and more than 400,000 non-registered regular readers (people who read messages but don't post anything.) This 10-to-1 ratio of "listeners" to "talkers" is pretty consistent with what I've seen in other online communities. We host more than 250 different communities. Some are devoted to a specific neurological disorder, like multiple sclerosis or Parkinson's disease. Others focus on issues that are important to a variety of patients, like our very popular "Artistic Expression and Therapy" community where people use creative writing and art to help them deal with neurological concerns, or the "Forget-Me-Not Garden of Memories," where they share stories of loved ones who have passed away.
TF: You also host some pretty unusual online communities. Can you tell us about them?
JL: One of my favorites was a BrainTalk chat room group called "Club Avonex," which was organized by about 50 housebound multiple sclerosis patients who had to self-inject themselves with the drug Avonex every day. This particular self-injection process is very stressful and often painful, so even though they lived in many different time zones, they all agreed to adjust their injection schedules so that they could all simultaneously log on to the "Club Avonex" chat room and inject themselves at the same time. That way, they could offer each other real-time guidance and support-before, during, and after the injection.
TF: What's the most unexpected thing that's happened in your online communities lately?
JL: Several years ago we got some unexpected publicity when Michael J. Fox started using one of BrainTalk's chat rooms after he'd been diagnosed with Parkinson's disease. At first he used a pseudonym, but over time he became close friends with two other group members, Bren and Nan. The three of them often talked about advocacy issues and what they could do to help find a cure for Parkinson's disease. At one point Michael decided to tell them who he really was--but they simply would not believe him. Bren told him "Yeah, sure. You're Michael J. Fox and I'm Faye Dunaway." Bren and Nan went on to found the very influential "People Living with Parkinsons" organization (www.plwp.org) a patient advocacy group. And Michael and I serve on their board of directors.
TF: You also host a second Web site, PatientWeb.net, for MGH Neurology patients. How does PatientWeb.net differ from BrainTalk.org?
JL: BrainTalk is a public resource that welcomes anyone who's looking for a self-help group for any neurologic concern. PatientWeb is a password-protected highly secure site where MGH Neurology patients can communicate with their local docs and participate in an online support group composed of MGH patients with the same condition. MGH Neurology docs can use PatientWeb to communicate with their patients online and to provide their patients with medical information. We've tried to combine the best of the conventional "talk to my doc" strategy and the "self-help group" approach, all in one package.
TF: You're also doing a very interesting PatientWeb pilot with neurologist Dan Hoch. Can you tell us about it?
JL: Dan has been one of our most enthusiastic clinicians, encouraging his epilepsy patients to participate in our in-house online support community. He participates in the discussions too, and as his patients get to know one another and become familiar with each group member's unique neurological conditions, he's working with them to find more sophisticated ways that he and the group can collaborate. We're hoping to develop in a new type of online co-care. This work is still in process, but it looks very promising.
TF: I've been impressed by the insight you've embodied in Lester's Law: "Medical knowledge is a social process: The conversations that occur around artifactual data are always more important than the data themselves." How did you happen to come up with it?
JL: It was something I'd observed in following hundreds of online communities in healthcare since 1994. Rather than worrying about "the quality of medical content" on the Internet, as many medical professionals do, patients figured out that the most effective strategy was to organize social networks focusing on specific healthcare issues. The power of these healthcare-oriented social networks can be quite phenomenal. Having good "medical content" may well be useful, but being able to tap into the expertise of hundreds or thousands of e-patients around the globe is considerably more powerful. The amazing thing is that patients figured this out a long time ago, while most healthcare professionals still don't really get it.
TF: What's the most important thing health professionals need to understand about e-patients?
JL: What e-patients actually do online is a lot more complex-and much more social-than most health professionals realize. A typical MS patient might say, "OK. First I'm going to check my e-mail-including my mailing list messages- and respond as needed. Then I'll go see if there are any new messages on my three favorite bulletin boards, and maybe post a few comments. Then I'll check my favorite chat room to see who's there, and if I don't get into any interesting discussions, I'll check my MS buddy list to see who's online right now and see if I can invite some friends to join me there. And after that I'm having lunch with Matt, an MS-er from California, who I know really well from the group, but whom I've never met before face-to-face. And after lunch I need to go to online to read the latest issues of the three key medical journals for MS so I can summarize the key articles for my support group."
TF: And you were saying that online community members can sometimes be a vehicle for providing medical advice to those who can't easily access a doctor themselves.
JL: They often serve that purpose. As one e-patient recently explained: "When I talk to my doctor, I hear myself asking questions that my online 'family' needs to know. It's as if all these other people-the members of my group-are asking questions through me. And whatever answers I hear from my doctor, I know I'll share with them online."
TF: How many medical professionals understand of all this?
JL: Well, there's you and me... (laughs) Just kidding. No, really, not nearly enough. These things are happening outside the documented clinical encounter, so most doctors aren't aware of them. And even when clinicians think they understand what their patients are doing online, they usually don't.
TF: How would interested health professionals go about learning what they need to know about the new realities of online consumer health?
JL: Go out into the self-help neighborhoods of cyberspace as an observer. Find the pioneers and communicate with them. See if you can find some low-profile way to support their efforts, e.g., referring your patients, answering group members' questions, or providing small-scale sponsorships or grants. But please, please don't even think about trying to direct or control these groups, or about sticking your advertising up on their sites.
TF: What have been the biggest surprises for you so far?
JL: The fact that the real pioneers and innovators of this field are the patients and family caregivers, not health professionals. That even though I'm a born-and-bred techie from MIT, the most significant discoveries I'm making are more anthropological and sociological than technological.
TF: Any specific guidelines you might offer to those interested in developing similar systems?
JL: Don't get hung up on any particular communication modality. It may work best to use several-message boards, chat rooms, instant messaging, two-way pagers, e-mail, mailing lists, telephone, whatever. Use standard "off the shelf" software wherever you can. Let your users shape their own world as much as possible. And don't think of IT systems as something cast in stone: You build, you get feedback, you modify, you get more feedback, you modify. And this process continues forever.
Published in The Ferguson Report, Number 9, September 2002
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