"Wouldn't it be amazing if everyone's medical records were available anonymously to research doctors? And if someone accessed your medical record, you could see which research doctor accessed it and why? We could maybe learn about what conditions we have. If we just did that we could maybe save 100,000 lives this year."
This was exactly the topic at a recent collaborative meeting in Washington, D.C hosted by the institute of Medicine (IOM) at the National Academy of Sciences. Representatives from all corners of the health care industry were in attendance, like the US Government, FDA, CDISC, electronic health records (EHR) vendors, electronic data capture (EDC) vendors, academic research institutes, pharmaceutical companies, policy makers, etc. This was the first time ever (and I checked) that all of these people have been at the same table at the same time. The meeting was focused on EHR-centered research, and was trying to understand what needs to happen to speed up progress and connect various online systems to share data in a meaningful and efficient way.
For me, solving the problem of connecting electronic medical records (EMRs) in health care and EDC platforms in clinical trials has been a discussion point for over 10 years (for others, it's longer). I believe we are at a key inflection point in solving this problem. A dialog has been opened between technology vendors on both sides of research and health care. For this to work, not only does everyone need to follow standards (CDISC, IHE and BlueButton being the best), but the business models need to evolve so the proper incentives are in place to ensure success. In my mind, if a patient can download their own data, they can share their own data. If they can share their own data, then they truly become consumers, not third parties (as reiterated in this Twitter thread below.)
@eclinical patients have to be consumers. Not 3rd parties (w/ payer & prov). Travelers became engaged when travel agencies became disrupted.
— Brock Heinz (@Brock_Heinz) June 5, 2014
When I am in meetings, clinical trial leaders often ask me: "Can you integrate EDC to EHRs on a large scale yet?" My response is: "Can you download your data from your own doctor yet? To connect research and health care, the answer has to be YES! Check out the video above to listen to Landen Bain from CDISC and I chat about how we thought the meeting went.
*For more on the IOM meeting, check out David McNierney's blog post, "Wicked Problems and Wicked Awesome Solutions."
*Guest blogger Joe Dustin is a senior solutions specialist at Medidata Solutions. Follow Joe on Twitter @eClinical.