Jeff Howe’s blog post, “Can We Crowdsource Medical Expertise?” elicited the following comment from Daniel Reda of CureTogether.com: “Personally, just like I have batting averages, crash test ratings and historical earnings, I’d like to see the data on whoever interprets my MRI and whoever makes my diagnosis, regardless of whether it’s an amateur in a foreign country or the chief of staff at the world’s ‘best’ medical center.”
This comment, and Howe’s post, get to the heart of participatory medicine. I would love to hear what people think about “crowdsourcing” and health care.
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James Surowiecki, who wrote the seminal book on crowdsourcing – _The Wisdom of Crowds_ – notes a prerequisite for this “wisdom” – you can get good and useful results from crowdsourcing if you’re deriving intelligence from an informed crowd. We see patient communities, like the various groups at ACOR, where the patients have taken time to research and understand their conditions, and through sharing information they become very knowledgeable, so they fit Surowiecki’s qualification – they know whereof they speak. Also the community and its members, through history of interaction, form reputation – you have an idea how “smart” they are about their subject of focus.
This differs from more or less anonymous conversations that might turn up in web searches, where you really know little about the participants and they may be totally uninformed.
For example, I was prescribed Cipro for a gastrointestinal infection not long ago, and I searched the web for background information. I found several discussions of side effects that were hard to assess because I knew little about the participants – these discussions were in a context that allowed some degree of anonymity. Some participants were driven more by fear (so many potential side effects, yikes) than real knowledge or experience of the drug, and others seemed to be considering lawsuits against Bayer and building their case in public. Generally not a crowd I would “source.”
On the other hand, I’ve joined an email list for people with psoriasis, and through ongoing discussion with some of the same participants, I’m getting a sense who’s knowledgeable, and I’m getting real value from discussions there.
So I think you can get credible help from a community of informed nonprofessionals, whether you call it crowdsourcing or not.
That’s a terrific contribution, Jon. You put words around something about which I had only a vague feeling.
It’s one thing to realize that the system isn’t perfect, but it’s another entirely to assert that “we could do just as well.” It’s worth a public conversation.
It’s aggravated by the occasional fool who asserts, for instance, that chemo is a hoax and the body can heal itself and all you need is properly ionized water. (That’s what someone badgered me with in May.) It would be good to stake out a well-informed middle ground – somewhere between “we know nothing” and “we can do it ourselves.”
Since word has gotten around in my community that I’m involved in this movement, I’m being contacted 1-2x/month by people with a new diagnosis who want to know what to do, where to start. I also find myself in casual conversations with people who are just curious what we’re about. It always gets around quickly to whether people feel confident about non-MDs uttering ANY opinion about things medical. Those who’ve had a bad experience have no concern, but those who haven’t have real concern about trusting a crowd.
Now I have something more to say to them. I sorta knew it, but now I know why and how, and what to look for.
One way to track the growth of patient-centered medicine would be to keep count of informed communities.
And here’s a big question: where DOES someone go to find an informed community about their condition? We need a registry.
Susannah, Dave, et. al, I think the interesting thing about this idea is that it’s a terrific opportunity for group medical practice.
In the 1940’s, the idea of a “medical group” was not received well in a medical community focused on the solo-model of medical care. Innovative thinkers of their time (led by patients) realized the benefit of a group working together on the part of a patient.
Now, it’s 2008 and the technology exists for medical groups to leverage their talents even more, yet many physicians in group practice much like solo practitioners of a time long ago, even if they are connected by an electronic health record, and most electronic health record systems are geared for “one doctor, one patient,” rather than “one doctor, many patients,” or “one patient, many care providers.”
I think the personal health record movement will change this (see my post about this), but also, what opportunities do we have in current medical groups to build upon what’s already there?
Ted