Crowd-sourcing your medical care

The work up of "fever of unknown origin" (FUO) is a classic exercise in internal medicine. Originally defined as a temperature greater than 38.3°C (101°F) on several occasions for more than three weeks with no diagnosis after one week of inpatient study, the definition has shifted. This reflects the dramatic increase in the sophistication of outpatient work ups in the fifty or so years since the term was formally defined. About a third of cases turn out to be infection, another third cancer, a smaller percentage so-called collagen vascular diseases such as lupus. A significant percentage go undiagnosed. The work up can be time-consuming and difficult, and various consultants are often called in. In a modern twist, a Chicago man has asked "the internet" to help with his own FUO work up (h/t reader HP). It is just the sort of puzzle internists love, and it looks like he and his significant other have been getting a lot of input.

I have nothing to add to the work up at this point, although it's interesting. What has me thinking is the potential pitfalls, ethical and otherwise, of crowd-sourcing one's medical care. The problems can be divided into two broad categories: those centered on the patient, and those centered on health care professionals.

The patient

Crowd-sourcing clearly has some potential benefits for the patient, especially those with unusual illnesses and limited access to tertiary care centers. Seeking out a formal second or third opinion might be financially or geographically impossible. There are plenty of medical folks to tap into on line.

There are also plenty of non-medical and pseudo-medical folks who will by happy to take a muddled clinical picture and toss it into the Cuisinart-of-woo for their own purposes. Separating useful advice from plausible-sounding crapitude is hard work and can provide distraction from seeking real medical care.

There is also the issue of privacy. If a patient provides enough data to be useful, they have basically outed themselves. Finding someone's identity become trivial when you know important facts like age, ethnicity, location, and medical problem.

The provider

There has been much written on the provision of care at a distance. In addition to some of the pitfalls of giving "informal" opinions to complete strangers with little of the usual give and take, if we participate, we are encouraging a patient to give out significant protected health information. While this is unlikely to be a HIPAA violation, I do worry about participating in this type of exercise with a potentially desperate and vulnerable patient who may not, while in crisis, care much about the implications and risks of publishing private health details online.

This isn't to say that I'm not fascinated by this case. I'm following it, thinking about it, and briefly thought about tossing in some opinions. But this is territory full of unsure footing and hidden pitfalls.


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Also problematic is inability to verify anyone's credentials. Is "Dr. Smith" really a doctor, or is he Joe-Smith-the-plumber? This is a potential problem for the "patient" but also for the well-intentioned clinician who enters the conversation. I might offer some advice in passing, even (quite accidentally, I'm sure) good advice. A little later on Chester-the-Molester uses whatever pseudonym I've given to post some awful misguidance which is now attributed to me. This risk might be tempered by some systems that require one to link a pseudonym to an email address - how likely is Chester to know my email? I must admit though, the good samaritan in me wants to help, and the intellectual "game" aspect of it is almost irresistible.

I wonder if the man doing this got the idea from the House episode a few months ago. I hope it works for him. Obviously the privacy issue isn't as important to him.

In ancient Mesopotamia, people who were ill used to park themselves in the street or the marketplace and solicit opinions as to possible treatments from random passing strangers. Now, we have the internet. It amazes me how we just update old behaviours with new technologies.

By Luna_the_cat (not verified) on 15 Mar 2010 #permalink

It's an episode of "House" come to life.

There's an update posted; says after he made the original post (not to "the internet," but rather to a specific audience that consisted mainly of doctors), they got references to two journal articles that seemed relevant, and it seems one of them has the answer.

That sounds really reasonable, to me. Not asking the world in general for diagnoses, but for pointers to sources that they may not have already considered.

I've benefited from something similar. Had a dog with serious problems, had been in and out of the nearby university vet hospital with no success. A friend suggested a specific test, which we had done, and it pinpointed the exact problem.

Our equine vet has taken a difficult problem for a horse and sought advice from the Veterinary Information Network. Not asking for diagnoses sight-unseen, just asking for pointers to the literature on the particular topic.

I wonder if my doctor would tell me if she had done something similar. I certainly wouldn't have objections, but I wonder if she might assume that I would--or if she might think that telling me was some kind of implication of lack of knowledge on her part. Every doctor can't be expected to know every issue off the top of her head.

If someone on the 'net can bring up a useful resource, or suggest a specific test that may offer insight, sounds great to me.

Just this past saturday I went to the doctor because I injured my toe 3 weeks ago and it still hurts. My diagnosis was "there's nothing I can do for it. You should have found that out on the internet." Yep the doctor told me to use the internet for medical diagnosis.

I was going to crowd source my knee but I had very bad results withing the smaller subset of medical professionals since the injury is relatively rare, that I thought it might be a bad idea.

But I did crowd source my pants. The problem is with an immobilized knee with a brace one needs frequent access to, what kind of pants does one wear. That worked pretty well.

G, I'm not saying it's a bad idea under all circumstances, i'm saying that it can have unanticipated consequences.

The patient has been revealed to be Jonathan Zittrain

Jonathan Zittrain is a Professor of Law at Harvard Law School, and faculty co-director of the Berkman Center for Internet & Society at Harvard University. Previously, he was the Chair in Internet Governance and Regulation at Oxford University and a principal of the Oxford Internet Institute. He was also a visiting professor at the New York University School of Law and Stanford Law School.

Oh, sure. I didn't mean to suggest that you thought it was an unequivocally bad idea--after all, that's not what you said at all.

I just meant that if it's done carefully, probably some of the pitfalls you mention won't be a problem--and that I know this is already done somewhat in veterinary medicine, and further, I wonder if it's done in human medicine and I don't know about it. (Will people looking for help online always be careful? Yeah, probably not. Still.)

The privacy issue you discussed, though, is certainly a problem already: the original post was anonymized (somewhat) and then the guy's own blogmagazine named him. They deleted the post, but it was too late for his anonymity.

In my quotefile, I have a line I read in an MST3K fanfic. (In these, Mike or Joel along with Tom Servo and Crow tear apart Usenet postings or similar material.) It's very relevant to this post, though alas, I no longer know who wrote it.

>>They thank you in advance for spreading this message on the net as much
>>as possible, and for sending them any available information on other
>>similar cases and possible cures.

CROW: Ah, the "if I'm going to go, I'm taking as many as I can with me"
reaction to death.
MIKE: So, their lives depend on a group comprised of the average users of
AOL or USENET having theoretical medical knowledge?
TOM: They're toast.

By Calli Arcale (not verified) on 16 Mar 2010 #permalink

Reminds me of that commercial where the woman's at the football field, asking about what to do (buy some product) of a legion of golf-shirted people who all contribute answers.
(commercial branding and store names redacted.)

Good post. While patient initiated divulgence of PHI isn't considered a HIPAA violation I agree that it isn't smart. I have talked about the personal health footprint that we leave when we discuss our issues. I don't think alot of patients think about this.