Selling your illness

A few months ago when I was doing some research about online medical  forums, I discovered PatientsLikeMe. At first I wasn’t sure what I was seeing.  I took at look at the About Us section, where I noticed that the site had a marketing team that seemed disproportionate to the rest of the staff.  Hmm.

It took a little more digging at the time (it’s more straightforward now) to see that this is a website for patients to share very detailed medical information with each other, building community and sharing sympathy.  Knowing how important this sort of interaction can be, I was intrigued.  However, there is a twist.  The site publishes an Openness Philosophy, which states in part:

You see, we believe sharing your healthcare experiences and outcomes is good. Why? Because when patients share real-world data, collaboration on a global scale becomes possible. New treatments become possible. Most importantly, change becomes possible. At PatientsLikeMe, we are passionate about bringing people together for a greater purpose: speeding up the pace of research and fixing a broken healthcare system.

Currently, most healthcare data is inaccessible due to privacy regulations or proprietary tactics. As a result, research is slowed, and the development of breakthrough treatments takes decades. Patients also can’t get the information they need to make important treatment decisions. But it doesn’t have to be that way. When you and thousands like you share your data, you open up the healthcare system. You learn what’s working for others. You improve your dialogue with your doctors. Best of all, you help bring better treatments to market in record time.

PatientsLikeMe enables you to effect a sea change in the healthcare system. We believe that the Internet can democratize patient data and accelerate research like never before. Furthermore, we believe data belongs to you the patient to share with other patients, caregivers, physicians, researchers, pharmaceutical and medical device companies, and anyone else that can help make patients’ lives better.

So, the site openly states that the users medical data will be shared with “pharmaceutical and medical device companies”.  The only outcomes they declare are beneficial.  Really?

As a cynical person, when I was sharing updates about my illness with others online a few years ago, I assumed that people from those companies might be lurking and mining the data.  One way of looking at PatientsLikeMe might be to say that, “at least it’s out in the open and they’re honest about it, and people aren’t forced to share.”  That was the reaction of a couple of participants when I posed this question at a medical anthropology session at the AAA meeting last November.

I lean toward another interpretation that came up in the discussion.  If there is a value in this data and it is being amalgamated and commodified by this company, shouldn’t the patients profit from the sale of their illnesses?   Who should own that data?  The Openness Philosophy states that patients do, but is that how it is treated?

I find this site to be troubling. Though the potential exists for users to invent illnesses and symptoms and break the system (see my earlier post on Munchausen by Internet or consider pranksters and hackers), I think it’s more likely people for to get lulled into a false sense of comfort.  Searching the site now, you can find out some shockingly personal information about users there, including personal photos and intimate medical details.  I’m not sure that this is the patient empowerment that is lauded in the site’s PR.  This is a personal opinion, though, and there is much room for debate.

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