Crowd-Sourcing a Medical Puzzle
The Times ran an intriguing experiment on its Well blog yesterday: a medical problem-solving contest. The challenge, based on the story of a real girl who lives near Philadelphia, drew 1379 posted comments and closed this morning with publication of the answer.
Dr. Lisa Sanders, who moderated the piece, says today that the first submitted correct response came from a California physician; the second came from a Minnesota woman who is not a physician. Evidently she recognized the condition’s manifestations from her experience working with people who have it.
The public contest – and even the concept of using the word “contest” – to solve a real person’s medical condition interests me a lot. This kind of puzzle is, as far as I know, unprecedented apart from the somewhat removed domains of doctors’ journals and on-line platforms intended for physicians, medical school problem-based learning cases, clinical pathological conferences (CPC’s) and fictional TV shows.
In this example, the patient’s diagnosis was known, and treatment successfully implemented, before publication. Surely the Times legal team carefully reviewed those scanned commercial lab reports with the wiped-out patient’s name and address, and likely they got the OK from the patient and her family to run the story as they did. There were sufficient details included that she’s likely identifiable to some people in her community.
The case is instructive at many levels: It’s not just about the girl and her symptoms and her disease, and how doctors think, but about how the population of New York Times readers approached it over the course of 24 hours. A question an editor, if happy with the “results” – i.e. the on-line turnout (clicks, emails, tweets…) and lack of flak – might ask is what sort of case to use next week or next month, and how perhaps to improve on the presentation.
The question I ask as a physician is this: why we don’t have this sort of crowd sourcing for tough, unsolved medical cases? Privacy is an obvious concern as is, perhaps, physicians’ fear of missing something or being wrong. Also, if a diagnosis isn’t already determined, the responsible doctor might end up (and likely would) order more tests and, perhaps, harm the patient by chasing zebras and heeding some well-intentioned but absurd or simply wrong suggestions from a diverse collection of world-wide readers. So there would be a problem of “too many cooks” among other issues.
On the other hand, a single physician dealing with a challenging case would have, potentially, access to the expertise of millions of people, perhaps a few who have genuine insight and have seen a rare situation before. Doctors needn’t think in silos.
Two years ago my son was diagnosed, after many doctor visits and numerous tests, with a rare but serious condition. We were fortunate, the condition was found and treated surgically before my son suffered any long term health problems. Still, I have often wondered whether his diagnosis could have been made more efficiently if his doctor had been able to use a crowd-sourcing approach through social communities. Certainly patient privacy as well as liability issues come in to play, but I think that social communities, particularly those which are limited to physicians,such as http://www.Sermo.com, can play a valuable role in speeding diagnosis, reducing suffering and minimizing costs, particularly when it comes to rare conditions.
Hi Jamie, You’re right to mention Sermo. (I almost did in the post.) But that site’s at least nominally closed to people who aren’t MDs. Part of what’s so interesting about the Times’ contest is that it was equal-access for all readers; there was no assumption that doctors know more or should think apart from the rest of the crowd.
Patient privacy is indeed an issue. But people should better be ready because the Obama administration is planning to “digitize medical records by 2014”. Even the “Centers for Disease Control and Prevention has also that about half of US physicians have already digitized their records at some extent”.
Despite of this, people are divided. There are those who privacy fears while there are those who are looking for other means to share their medical history. One of these means is PatientsLikeMe.
All the more, online medical data sharing and other crowdsourcing initiatives in the medical field poses great importance for both patients and medical professionals. Read more on http://www.crowdsourcing.org/l/198.