CMS has launched an effort asking consumers for stories on their ability to access and share their medical information. It seems to be part and parcel with the agency’s MyHealthEData initiative, a broad initiative focused on giving every American control of the medical data which was launched last May.
The current campaign was kicked off in a tweet by CMS Administrator Seema Verma:
Had trouble getting your health records? Or getting your doctor to share your records with other doctors? Tell us about your experience moving your health data between your drs, specialists & health insurance plans & the impact on you. Submit your story: MyHealthEData@cms.hhs.gov pic.twitter.com/ZVxlH5aiTB
— Administrator Seema Verma (@SeemaCMS) May 6, 2019
Verma’s tweet sparked an interesting conversation about such access among other Twitter users. For example, Matthew Taber noted that mobile health access is making things easy for him:
I can easily get my medical records thanks to Tim Cook and @Apple getting my academic internist’s facility into their medical records program on the iPhone. Thanks to them, my records are with me 24/7 and travel with me anywhere. #ItsMyMedicalRecord
— Matthew Taber (@matthewtaber) May 7, 2019
Another user, Jen Graff, pointed out that even if patients do have access, not all medical record data is made equal:
Data= Knowledge. However, even working within the system, hard to not only get your records, but to get them in a usable form. Binders and three hole punch “notes” don’t help. #ItsMyMedicalRecord https://t.co/2sKsbLr1yc
— Jen Graff (@Jennifersgraff) May 6, 2019
In another tweet, Vitali Khvatkov made a good point about who is really likely to drive demand for medical record data:
The problem is that for the patient having record has low utility, its other players – doctors, labs, analytics, apps, drug makers, ACOs, etc. who can utilize patient information and get some benefits. It’s problem of “Appropriation of Rents”
— Vitali Khvatkov (@VitaliKhvatkov) May 8, 2019
The latter tweet brings up a particularly important point too seldom mentioned in discussions about patient medical record access, which is that we still haven’t turned most Americans into eager health data users. (Heck, I’m a mad patient advocate and I’ve never wrestled with getting my entire medical record.)
Oh, don’t get me wrong, there are patients and caregivers who want and need access to the patient’s complete medical information, and also need to be sure that that information can be shared freely between providers. The thing is, in my experience few consumers spend a lot of time chasing down their health data until they need it.
As a result, we are not likely to see a massive groundswell of patient indignation over medical record access and sharing in the near-term. And of course, while CMS may have the regulatory power to force change, it can take a looooong time to happen.
To be sure, I’ll be interested to read the first stories CMS collects on this topic. I just don’t know if the effort will do anything to overcome some providers’ aversion to making medical record access easy for consumers.