Among the most frustrating dilemmas facing patients – and physicians – is when doctors are unable to assign a specific diagnosis. Just having a name for a condition can be remarkably reassuring to patients (and families), providing at least a basic framework, a set of expectations, and perhaps most importantly, an explanation for what the patient is experiencing.
Sara Wheeler, writing in the New York Times in 1999, poignantly described the experience of traveling through “the land of no diagnosis.” Ten years later, the NYT featured a story called “What’s Wrong with Summer Stiers,” about another patient without a diagnosis – and about a fascinating initiative at the NIH, the “Undiagnosed Disease Program” – specifically created to meet this need.
Today, some patients and their families are taking this process one step further: when experts can’t help, perhaps the crowd can.
Around two years ago, Simon Turkalj’s wife – herself a physician — developed seizures in the first trimester of her fourth pregnancy. Since then, she has suffered from frequent seizures at night, without obvious cause despite an extensive medical workup at a leading tertiary care center.
Frustrated, Simon decided to celebrate her birthday this year by giving her what he describes as “a different kind of gift – a diagnosis.” At least he hopes so – and he’s relying upon the crowd (and more generally, open innovation) to deliver.
He has set up a Facebook page devoted to the diagnosis of his wife, and including links to all of her relevant medical history, data, and information, in hopes that someone will recognize the pattern, and offer a cogent explanation, a unifying diagnosis.
Facebook has been used before to diagnosis illness – for instance, this case of Kawasaki’s Disease; moreover, it seems like a pretty smart approach – assuming, of course, you don’t mind the conspicuous loss of privacy.
Most immediately, I hope someone finds a diagnosis for Simon’s wife; I also suspect it’s only a matter of time before a clever developer sets up a website devoted to crowdsourcing medical diagnoses (perhaps even offering prizes, InnoCentive-style); it’s even possible this is occurring already.
Beyond this specific use case, however, it’s also fascinating to think about the many ways in which the Facebook platform could be leveraged to both learn about health and improve health; the much-publicized organ donation initiative is probably just the tip of an exceptional opportunity here — particularly for extensive real-world measurement and for behavior modification.
For all the discussion about novel technologies in digital health, it’s quite possible that one of the most powerful technologies we have – certainly, one of the most promising enabling platforms – has been sitting right in front of us the whole time.
It’s an attractive opportunity that’s hard for anyone passionate about health not to like.
Addendum (July 1, 4:45p PDT): Thought it might be useful to reiterate here my response to a thoughtful reader comment below: In my view, it’s limiting to focus only on how Facebook is currently used in health (whether for diagnosis, such as the example discussed above, or for physician practice marketing, such as the reader example below). Rather, thinking a bit more broadly, it’s exciting to contemplate whether — using a combination of existing data (which Facebook undoubtedly collects) and compelling user engagement (which Facebook undoubtedly offers) — there are untapped opportunities to learn more about health and to drive improvements in health, perhaps in combination with additional applications or consumer devices.
David Shaywitz is co-founder of the Center for Assessment Technology and Continuous Health (CATCH) in Boston. He is a strategist at a biopharmaceutical company in South San Francisco. You can follow him at his personal website. This post originally appeared on Forbes.
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While chatting with a clinician about how his practice uses Facebook, I came up with the following description of the current state of affairs: “awkward, but great.” It’s awkward that patients, caregivers, and clinicians are using FB to connect with each other for information exchange, but it’s great that they are doing so. Apply to your favorite social tool.
Hopefully the research that my organization, the Pew Internet Project, is conducting is useful to this conversation. Note: we don’t have a dog in the fight – we collect data on where things stand. I invite you to check out:
Social networking sites and our lives
@ Fran – you miss the point.
Shaywitz isn’t drinking the kool-aid.
At this point, the social network is a utility. Dr Shaywitz is showing us a good use of a simple technology. I can think of at least ten similar experiments that could really help people – right now, today.
– Get volunteers for my clinical trial
– Find an organ donor
– Help me cover my health care costs
– Connect me with a second opinion
– Win support for government funding of my disease or new treatment
– Highlight an abuse in the system
– Fund my experiment
– Compare notes with professional colleagues (physicians)
– Understand my treatment options and choices with specialists.
Go take a look at the communities and individual pages on Facebook and other social networks before you pass judgement.