The Value of Our Health Data / by David Driscoll

Immediately upon joining Ciitizen as director of marketing and communications, I had a lot of homework to do. I understood the mission: to help sick patients, particularly those battling cancer, obtain and share their health data. I understood the point: the advance of precision medicine and modern care is dependent upon our individually specific information. However, it wasn’t until I started researching the potential roadblocks ahead of us that I discovered the economics at play. Considering everything I know about social media and the business of collecting consumer data, I probably should have put two and two together, but like most other patients I generally have other things on my mind when I’m at the hospital.

Perhaps naively, I had no idea that my medical information was valuable to anyone other than myself and my doctor. That my health history could be de-identified and sold as a commodity without my knowledge was a bit of a shock. What was more distressing, however, was the idea that someone in dire need of their data couldn’t easily obtain it. Value in a commodity is based on supply and demand. When health data is harder to come by, it’s worth a helluva lot more. If patients were able to control and share their own health information, the supply chain would open up and the business of selling bulk data would be far less lucrative. But that would be bad for business. Hence, our health information remains trapped in these valuable silos to protect the monopoly.

When I’m distressed, I tend to talk (a lot), so I began telling my friends and family about my new job and the difficult task we faced at Ciitizen. In order to really drive the point home, I had to explain in great detail the inner-workings of our health system, but I struggled to summarize the message succinctly. Rather than clarifying the issue and communicating just why our health data is so important, I ended up ranting and raving for fifteen minutes, babbling about everything from HIPAA to clinical trials. In short, I needed to make a better outline if I was going to be an effective marcom director.

That’s when I stumbled upon this great Twitter post from renowned cardiologist and Scripps researcher Eric Topol (as you can see, it’s been shared quite a few times):

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Since then, I’ve used Dr. Topol’s fantastic bullet point flashcard as a quick resource to help easily explain the significance of our health data. Our data. It covers all the main points, all the roadblocks, all the BS, and it gets right to the core issues that drive our mission here at Ciitizen:

It’s your body. It’s your data. It’s quite valuable. It’s being sold without your knowledge. And it could save your life.

-David Driscoll