Personal Medical History Controversy

Submitted by hci3-usr on Friday, May 20, 2016 - 04:28

Newtown, CT – May 20, 2016

When did someone’s personal financial history become less sensitive than someone’s personal medical history? In all the brouhaha about an individual’s medical history, we seem to forget that personal financial history is available at the touch of a few strokes, the imprint of a finger on a phone, and countless applications that can consolidate data from various sources, made available through APIs. Yet what is possible with financial information seems controversial for medical information. At least controversial for the ivory tower dwellers that are anointed with the power to advise the government and potentially block the freeing of medical information. While the majority of these advisors recently voted to make an individual’s medical history more accessible through APIs, the closeness of the vote means that there won’t be any action soon and that the appointed chairs of the advisors will now work on a compromise. How nice for the rest of us that non-elected officials get to decide what happens with our medical information. In the meantime, the use of that information by patients and their physicians, by research organizations and affinity groups could help inform policy in a real democratic and direct way instead of the undemocratic and indirect way it’s being done today. As Joe Biden said during a recent talk at HealthDatapalooza, the politics of medicine, driven by the interests of those who sell trillions of dollars of services, is what’s getting in the way of progress. And we’re seeing it play out every day.

What this means to you – Most of us would readily agree that our personal financial information is as important as our personal medical information and yet there isn’t some bureaucratic body that prevents us from allowing access to those data by third party apps that we feel will help us better manage our finances or plan for the future. If I want to share my information from one accountant to another, from one financial firm to another, it’s simple. But if I try the same with my medical information, I have to go through a nightmare maze because those who have the data try very hard not to share it. The difficulty is compounded when you have a serious medical condition and would benefit from your information being shared with others who have a similar condition. For example, if consumers could use a Cancer Care app that would absorb their medical data and aggregate it with that of others, much could be learned about the effectiveness of therapies, and of course, the cost of those therapies. That’s a huge benefit for consumers and a potentially huge loss for all those who make money thanks to the opacity of the system. We all know that cancer drugs are going up for no good reason other than they can, that treatments vary between patients simply because pathways aren’t followed, and that the result is billions in waste – too much of inappropriate care, and complications from not enough of the right care. To address some of the perceived perverse incentives that drive that variation, CMS has issued a clumsy rule to change the reimbursement for drug therapies provided in physician practices, and our friend Harold Miller sums up nicely the unintended and negative consequences the rule may have on cancer patients. In this matter like in many others, the solution misses the point. Sometimes it’s not the financial incentives that are bad, it’s the fact that no one can really observe what’s going on. That can and will change if we simply accept that our financial history isn’t less important than our medical history and stop allowing unelected panels of “experts” to decide what’s important to us.


Francois Sig


Francois de Brantes
Executive Director