Stacey Tinianov, one of the most passionate advocates for cancer awareness I’ve ever met, wrote this week:
“It is NOT hyperbole to say health data portability will save lives.”
I think the inverse is also true. It is NOT hyperbole to say that a lack of health data portability will continue to cost lives. I hear about it all the time.
Failing to release pertinent health data in a timely fashion to a patient in need is inexcusable. But failing to provide it in a format that can actually be used can be just as bad.
This past week on Twitter, CNBC journalist Chrissy Farr wrote that it’s “just amazing to be talking to physicians” who need to “keep around the CD-ROM drive so they can upload their patients’ imaging.” She then invited healthcare companies to upload any “dinosaur tech” they keep around the office for similar reasons. I sent her this:
When lives are on the line and important health data is still being provided via antiquated methods like CD-ROM, people get fired up. We saw a litany of fiery responses worth sharing here:
We had to bring in an old CD-ROM drive to help patients organize their health information at Ciitizen because that's the only way a number of health institutions would provide it pic.twitter.com/uKLuVAjJgX
— Ciitizen (@ciitizencorp) October 25, 2018
It is indeed “embarrassing for healthcare” that patients have to deal with this type of “burden” in 2018.
But as Stacey also wrote:
“There are too many egos and six and seven figure salaries involved to expect that electronic data systems, academic research facilities and healthcare systems are suddenly going to share information freely for the purposes of research” and make things easier for patients.
We can’t wait for the industry to figure this out. It’s time we exercise our HIPAA right of access, take matters into our own hands, and come up with our own solutions.
Originally published at https://blog.ciitizen.com on November 1, 2018.