A patient live blogs his hospital stay, looking for a cure

Here’s a novel, and incredible, use of social media in health care.

A 40-year old man was admitted several days ago with a fever of unknown origin. His significant other, Laura, is live blogging his hospital stay — hoping to solicit other medical opinions on the case, as there is no clear reason on what is causing his symptoms.

Blogging at The Z Update, here’s an excerpt of how he presented:

Z’s been running a nightly fever for the past 3 weeks (gone by day), and last Monday saw his GP when the fever persisted and began to creep upwards. His doctor recommended a few basic tests, which led to a CT scan of his abdomen on Thursday (standard procedure for a fever of unknown origin — FUO). After the CT scan showed an 8cm “blob” (not tumor) on his liver, the GP recommended he do an MRI and a few more tests with specialists — and the easiest way to accomplish this was to check into the hospital.

Test and imaging results, along with conversations with various consultants have all been disclosed on the blog.

The patient, who has given me permission to publicize and link to his blog, has “open-sourced” his medical records, in hopes of having fresh pairs of eyes look at his case — all while still an inpatient at the hospital. As he puts it, “The more cooks the better the soup!”

Best wishes “Z,” and if anyone can help, feel free to comment over at the blog.

Update:
The patient has left the hospital. Listen what he has to say about the experience.

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  • Pat Jonas, MD

    House (on TV) had a case like that a few months ago in which the patient offered a $25k reward for the person getting the diagnosis.
    The patient in the blog may not have great confidence in his medical team, as is probably also true of Laura, the condenser of information for feeding to cyberdoctors. There may be some HIPPA and ethical issues identified during the care of this patient, so the ethics committee might be considered for consultation also, to stay ahead of the unique “fog” that may arise. Good luck!

  • http://thezreport.tumblr.com Laura

    Dear Pat,

    Thanks so much for your reply. A few thoughts on why we’re “open sourcing” this strange case –

    Because it’s a strange case, a “fascinoma” that lies along the long tail of diagnoses rather than anything obvious! Many eyes make all bugs (including bacteria?) shallow. In no way is there any absence of confidence in the doctors or anyone on the team — they are brilliant, conscientious, and caring, and they too are reaching out to specialists to see if somewhere there’s a pocket of knowledge that can shed light on what is shaping up to be an extremely unusual and difficult-to-corner problem. We are beyond impressed with the team — just hoping to find a way to appropriately help them leave no stone unturned, while realizing this is new territory.

  • Happy Hospitalist

    That’s interesting you bring that up since I just blogged about using social networking for hospitalized patients when a DKA patient tweeted bicarbonate level. I think social networking sites have an enormous potential to change the way we do a lot of things in life. Perhaps someday I will be a Twitterist caring for patients online instead of a hospitalist at their bedside. Perhaps a Hospitwit.

  • http://www.drjshousecalls.blogspot.com Dr. Mary Johnson

    Hummmmmmm . . . I wonder how our patient would feel if the tables were turned and his doctor were “live-blogging” his care/opinions?

    Of course, in live-blogging his care (to any third-party who wants to read about it), I suppose the patient has waived all of his privacy and confidentiality rights.

    Twitter on.

  • http://healthblawg.typepad.com David Harlow

    As others have noted, the patient’s privacy is his to waive, and he has apparently done so in permitting his s.o. to liveblog the episode. It seems to me that there are more efficiant ways of crowdsourcing ideas in this circumstance — i.e., through established online communities, be they walled gardens (Sermo) or even twitter hashtags. Starting a new blog isn’t really the way to gather an instant following (unless of course you’re lucky enough to be picked up by KevinMD). Once some specific ideas start flowing in, though, how do the treating physicians verify the credentials of the folks ont he other end of the blog? Are they going to be distracted from patient care demands in order to do so? Ultimately, any treatment decision will be the responsibility of the clinicians on the spot, and while the proverbial needle in a haystack may be found through this exercise in crowdsourcing, the patient and his s.o. are asking a lot of the treating clinicians (IMHO) by inviting a torrent of suggestions and thus requiring the treating clinicians to consider them all seriously, for failure to take one seriously could expose the treating clinician to malpractice liability in this circumstance.

  • http://HealthMedWatch.com Tom Farrell

    Something tells me this is a scam. Has this been verified as real? Or does it really matter?

    • http://www.kevinmd.com Kevin

      This is not a scam, and his identity has been verified.

      Thanks,
      Kevin

  • tgottsdo

    I think its an interesting experiment although I hope it doesn’t catch on. I would hate to have to walk into every patient’s room to confront that days opinions from around the world. I think its also interesting to note that according to the update the doctor’s on the scene were coming to the same conclusion as the 1990′s article from Korea. I find that often times patients put more weight in the opinions of others including internet experts, friends, nurses, friends whose cousin is a nurse, friend of a friend whose neighbor is a radiologist… etc., then on the opinions of the doctor’s at the bedside. I’ve had patients bring me in print out’s from the internet that were basically excerpts from a text book… I wasn’t sure if I should be amused or insulted that my patient wanted me to read a text book chapter on his condition.

    On the other hand the internet can be a valuable tool. When I was serving with the US Army in Kosovo I was the only Internist in the hospital. The Army had set up e-consults where we (meaning doctors serving around the world) could ask questions of specialists via email. It was a handy tool to have available…

    Like I said interesting experiment but I can’t help but be reminded of the commercial for a job site where the tennis players are overwhelmed with people running out of the stands trying to hit the ball… and eventually just walk off the court.