What are the ethics of crowdsourcing a diagnosis?

Posted on July 30th, 2012 by Mark Ryan, MD

Editor’s Note: Mark Ryan, M.D., is a member of the External Advisory Board for the Mayo Clinic Center for Social Media.

About a month ago, I received a request from one of my practice partners. They are working with a patient with a number of chronic, hard-to-treat medical illnesses that may or may not be part of a single syndrome or underlying problem. Despite the fact that this physician is an excellent clinician, they have struggled to put the pieces together and are worried that they are missing something.

The e-mail they sent me reads "i have a patient with an odd constellation of chronic medical problems...it seems to me something might tie these together...i mentioned to the patient the crowdsourcing idea on twitter and he was open to trying this"

I have spoken with this physician, but I have not spoken personally with the patient yet. I have not taken any steps to crowdsource this patient's illness because I am honestly not sure how best to do it...or even if itshould be done.

So: I would like to crowdsource the ethics of crowdsourcing. I am hoping to hear from other physicians, but especially from patients and patient advocates who have faced challenging illnesses and diagnoses.

  • Is it appropriate (with a patient's permission, of course) to post a patient's medical history in a public forum as a way to consider and evaluate possible diagnoses?
  • If so, what sort of permission is necessary? Is there some sort of consent form that one can use to ensure that patients understand what it means to have their medical history posted on social media? If a patient's symptoms are unique enough, then they can presumably be identified by a reader, so how can this information be posted (or what sort of waiver/consent is needed) to ensure that HIPAA is not violated?
  • I would presume that making the information visible and accessible to the patient would be the best approach--for example, posting as a blog update that they can review and upon which they can comment even during the discussion among physicians.
  • How much do we need to vet this idea/process--if it goes forward--with our health system's legal department?

I think that there could be great value in using social media as the world's largest "curbside consult" in which we ask peers to provide suggestions and insight but the primary physician retains sole responsibility to determine treatment plans with their patient. In essence, the crowdsourcing would be like an enormous brainstorming session to help come up with ideas that the primary physician might have overlooked or failed to consider.

Please send me your thoughts--feel free to comment below. This feels like an awfully large step, and one that I do not want to take into thin air.

 

Tags: crowdsourcing, ethics, mark ryan MD

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