Practicing Patients: The Response

Thought I'd jot down some of the feedback I've been getting to my story in the NYT Mag on PatientsLikeMe. Overall, I've been fairly blown away by the response – I've gotten dozens of emails and the story has been been blogged mightily. In stories like this, where I'm writing about one company or person, it's important to keep in mind that the enthusiasm is more for the ideas and portent of PatientsLikeMe and not my story, per se. But I'm going to assume that the humble messenger - me - did a fair job conveying the import of the message, and that that's worth something. Anyway, the reactions fall along a few lines:

1) Patients are thrilled. I've gotten some striking messages from people with a chronic disease or from people related to a person with disease, for whom a resource like PatientsLikeMe is a godsend. Many patients with chronic disease are, surprisingly, simply left confused by their interactions with the medical world - doctors and specialists all telling them slightly different things, giving them slightly different courses of action and treatments. The ability to connect with others like themselves and then, moreover, to take *their* advice on treatments seems remarkably clarifying for these patients. " went to a conference in Tampa," one wrote me, "and different doctors believe in different treatments with different patients. Is this because of where they were trained or evidence-based medicine?"

It's a fascinating problem - one I hadn't anticipated. I knew patients would be eager to get resources other than their doctors; I knew that they were frustrated with the time they get from their doctors; but I didn't realize that they were so frustrated with the *information* they're getting from their doctors.

2) Doctors are leery. I knew this was out there, and I tried to make sure the piece reflected the skepticism, and in some cases antagonism that physicians might have towards a resource like PatientsLikeMe. This isn't just for competitive reasons (though there is that element). I think doctors are legitimately concerned about their physicans patients embarking on treatments that may hurt them rather than help them, and that the power of PatientsLikeMe's data - it all looks so convincing - might compell some patients to disregard advice or treatment to their detriment. But another aspect to this is that doctors aren't comfortable, themselves, with the idea of their world being transduced into data.

Medicine, from a physician's POV, is still largely empirical. Diagnosis and treatment is often guesswork - educated guesswork, but still guesswork. They are trained in science - educated in science - but that doesn't mean doctors are all comfortable with the idea of data-driven decision making. (read Jerome Groopman's How Doctors Think for a startling - to my eyes - reminder of how much variability there is in physicians' diagnosis). Since PatientsLikeMe reduces all this to data - treatments and results are right there to be correlated - it's an unnerving glimpse into the future.

3) The field is wide open. Among general readers, many have fastened onto the story's penultimate paragraph:

Really, when you start looking, information can be found everywhere. If we could gather in structured communities and create databanks to inform our approach to life decisions, not just health decisions but also gardening or parenting or car-buying decisions, we could do everything in a more informed manner. Were we all to avow a philosophy of openness and churn our experiences into hard numbers, we could presumably improve our odds in all sorts of decisions. Why not a PregnantLikeMe or a ParentsLikeMe or even, really, an all-encompassing PeopleLikeMe?

First off, as a writer it's terribly gratifying to know that folks actually made it to the end of a 5,000+ word article. So that's nice. But really, the idea here is one that I've been mulling over for a few months - the power of data to be collected and deployed in unanticipated places for unexpected results. I'm especially interested, obviously, in the potential of data to affect health-care, both in terms of predicting and averting illness as well as to treat it (more - lots more - on this later). So it's doubly gratifying that this idea has such resonance among readers - that ordinary folks get this idea, that there is power in ordinary life, in unharnessed information, to guide our actions. It's the idea, really, that some sort of meta-analysis of daily life could go on (should go on?) that would let us *really* learn from our mistakes. Obviously, as the next graph in the story made clear, I'm not the first one to have this realization. So it'll be fascinating to explore where this idea goes, and how innovators may respond to both take advantage of the opportunities for data collection and aggregation as well as to respond to the demand individuals have to make better decisions.

4) Some metrics. So since this was such a data-intensive story, I thought some metrics might be illuminating.

7 6 - highest rank of story on NYTimes' Most Emailed list. [corrected! Someone caught it at #6, & passed along the JPEG to prove it]

30 percent - Amount enrollment at PatientsLikeMe has increased in seven days.

10 - factor by which enrollment at PatientsLikeMe mood community increased (from about 100 members to somewhere just over 1,000) in that time.

14 - Number of companies who've written to tell me they loved the story - and wouldn't I like to speak to their CEO? (Honestly, I appreciate these emails & have learned of some interesting endeavors because of them)