I have the privilege of sitting next to Deven McGraw at our Ciitizen office in Redwood City, which means I also get to hear the conversations she has regularly with hospitals while requesting medical records on behalf of our Ciitizen beta patients.
If you missed Deven’s blog about health data rights on Tuesday, I’ll give you the takeaway: the woman who was once Deputy Director for the HHS Office for Civil Rights and helped write the guidance that explains patients’ right to access their health information is now here at Ciitizen helping individuals take advantage of it. I’ll be honest here: listening to Deven lay down the law on an unsuspecting medical clerk who tries to stonewall her is pretty energizing. But that’s only because the amount of bureaucratic bullshit that some of these hospitals put forward is so infuriating. The amount of hoops many of these offices make sick patients jump through is ridiculous.
What’s encouraging, however, is that the word is getting out. Each day I read more and more stories that highlight the difficulties faced by patients when requesting their data, which helps put more pressure on these hospitals to comply. To be fair, I don’t think every records department out there is purposely making things difficult. Many times I think they’re simply caught off guard by the request because historically so few patients have tried to exercise their HIPAA right of access, and the offices may not have received accurate instructions on the law and what they’re supposed to do.
But the more we request our records, the more we put pressure on these hospitals to better comply with our rights as patients. Healthy citizens sometimes don’t see the point in asking for their health information, and because we don’t regularly ask, processes remain outdated and cumbersome. That lack of compliance ends up disproportionately affecting sick patients as a result, those who actually need their health data, but end up getting the runaround (of course, more enforcement by regulators would also help—a lot.)
So let’s start asking. Let’s utilize our HIPAA right of access, call our hospitals, and ask them to release our data to us. Deven has outlined your data rights. If you experience any pushback, or your hospital doesn’t comply with the regulations, we invite you to share your story with us at firstname.lastname@example.org.
As Deven stated, “by talking more about it, we can be even more of a catalyst for change.”