As I was hearing all the buzz about plans to overhaul health IT regs, I couldn’t help but wonder if there was a connection between making all those electronic health records easier to share and some of the big data initiatives in medical research.
It turns out, I was onto something and some really knowledgeable folks were super eager to talk about this.
I reached out to Rebecca Kush after reading the New England Journal of Medicine perspective she co-authored, “Electronic Health Records, Medical Research, and the Tower of Babel.” The folks at her company, Elligo Health Research, mentioned she was traveling internationally, so I didn’t expect to hear back.
But she did get back to me, while wading through an airport security line, in Nairobi!
Deven McGraw called me from the HIMSS conference where, Seema Verma, administrator of the Centers for Medicare & Medicaid Services made her big announcement that the government was going to overhaul health IT rules to make it easier for patients to access their medical records and easier for them to share. “That created this exciting vibe that has permeated the whole conference,” she told me. (McGraw, by the way, oversaw health information privacy programs for the Health and Human Services Office for Civil Rights before leaving for startup Ciitizen.)
And, of course, when it comes to EHRs and medical research, I couldn’t but help think of the All of Us research project, which is supposed to start this spring and will enroll a million people (and their medical records!) to advance precision medicine. When I first started covering precision medicine, Amy Abernethy, chief medical officer for Flatiron Health, spoke at almost every panel (her company has developed cloud-based software to accelerate cancer research). She mentioned three challenges that must be overcome.
And last but not least, Mark McClellan is a physician and an economist who’s run both CMS and the Food and Drug Administration, and is now the director of Duke University’s health policy center. Plus, he’s co-chairman of a National Academies committee on real-world evidence.
They offered a lot of really useful insight on this intersection of digital health and medical research. What did they have to say? Well a lot. But you’re going to have to read the actual story to find out. You can do that here.
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