Using the crowd to help diagnose rare diseases

Earlier this week I joined NEA entrepreneur Jared Hyman of and “the current” host Anna Maria Tremonti of the Canadian Broadcasting Corporation in a discussion of crowd sourcing in Healthcare.  A brief summary and audiocast of the show is available.

3 thoughts on “Using the crowd to help diagnose rare diseases

  1. I caught some of your recent interview on the CBC’s “The Current” during which the topic was crowd-sourcing efforts at medical diagnosing. I wonder if you know of anyone using crowd-sourcing to identify patterns of side-effects to medications? I believe that physicians in North America are supposed to report medication side-effects they notice in their patients. However, I also believe that the current mechanisms for such reporting are onerous and result in significant under-reporting. For this reason I hope that someone has created, is creating, or will create a crowd-sourcing program/website that allows the consumers of medications (i.e., virtually everyone) to easily report their self-perceived reactions to medications. I can imagine such a program could analyze the accumulated data to identify trends and report them to the drug manufacturers and appropriate governmental bodies and the media. I look forward to your answer. Thank you.

  2. Hi Perry, I’ve seen a few projects along these lines. Post-trial surveillance is a big hot button in Pharma these days (i.e. learning more about how a drug behaves in the population over the long haul). Companies like,, or do things like this already, but not as their primary job. The Health Heart Study at UCSF is looking at this in the context of heart disease, but there isn’t a systematic, large-scale platform focused on addressing this question today that I’m aware of.

  3. Thank you for your reply, Ian. I took a look at the websites you mentioned. They are interesting – I particularly liked the structure of the site. If a website like the one I envisioned was created, do you think its owner(s) would have a lot of legal problems if certain drugs were found to be reported by many within the “crowd” as being associated with negative side-effects? Currently, Baer seems to be having a marketing/legal headache (pardon the allusion) with its oral contraceptives Yaz and Yasmin being associated with deaths of 23 Canadian women who typically died from complications of blood clots within a few months of being prescribed one of the drugs. I believe that the figures come from a Health Canada database. I wonder if a non-governmental organization or private company would be targeted with lawsuits from companies such as Baer if they gathered similar data that show associations with negative health outcomes?

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