Social Media Week: The Patient Platform

This week, events in 21 cities around the world are being held as part of Social Media Week. Yesterday, I attended a session called “The Rise of the Patient Platform.” The session was led by Matthew Zachary, founder of the I’m Too Young for This Cancer Foundation, and Mailet Lopez, founder of I Had Cancer.

Both are cancer survivors with quite compelling personal stories. It is nice to see patient advocates in action, attacking a problem because of strong personal interest rather than solely as a business opportunity. Zachary summarized the patient approach to development well when he said, “You want to help the next you not have to go through all the crap you went through.” Good for him, I agree completely.

Yet the conversation after that was not what I expected. When I see a session title use the term “Patient Platform,” I think of a site that has a rich technological offering with an API allowing multiple developers to participate. Facebook is a platform that allows companies like Zegna to build and innovate. In case you missed it, there was a very famous rant on Google+ by Google developer Steve Yegge about why he thought Google should be enhancing its platform. He meant to post it privately for his colleagues, but made it public by accident.

Anyway, I was hoping that yesterday’s session would not only touch on the topics of patient empowerment and by-patient-for-patient development, but also entail some of this leading technological philosophy in mainstream software development. Unfortunately, this was not the case.

Both founders have produced wonderful sites and have certainly helped thousands of their fellow patients. But at the end of the day, these are more examples of patient support forums that have existed for over a decade.

I was disappointed when the discussion turned to sites like PatientsLikeMe, the groundbreaking site developed in 2004 by MIT engineers Ben & Jamie Heywood along with Jeff Cole. Ben & Jamie’s brother Stephen had been diagnosed with ALS years earlier. PLM was their attempt to help their brother with a novel new approach. The site aggregates treatment data entered by patients and makes the information public. It benefits patients by allowing them to see real-time data on various drug options. It also benefits the medical industry by making it easier for the developers of potential new treatment options to have easier access to data. The site has been a leading innovator in the industry.

The hosts yesterday however downplayed the site’s value, saying that the community support is ineffective.¬†Matthew Zachary stated, “PatientsLikeMe is not about peer support. It’s about aggregating patient behavior” and marketing this information back to the medical industry.

I find his comments discouraging. As a patient with a chronic condition that requires me to make multiple daily decisions that affect my control, I find an approach like PLM sorely needed. In fact, comments in other diabetes patient forums repeat that diabetics are looking for precise and actionable information that can make better decisions themselves. Unfortunately, no one to date (including PLM) is offering the type of quality support to diabetes patients that PLM can offer to ALS patients. I hope that this can change soon.

Peer support is obviously essential for patients. But we already have enough patient forum conversations. It is time to build upon the PLM model and merge a data/social approach. At the end of the day, having quantifiable information to back up your feelings about your condition is critical.

Perhaps every condition is different. I do not claim to know much about cancer treatment. But after 25 years as a diabetic, I do know this area well. I will continue researching into a data-driven approach to patient support because I am convinced that will prove more helpful than a purely social one.

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