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.
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.
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.