Patients' Rights vs. Information Blocking

Updated: Mar 17, 2020

2/6/2020

Alex Azar speaking at ONC Meeting 2020
HHS Secretary Alex Azar

We continue waiting with bated breath for the 21st Century Cures Act Final Rule. In the past, the HHS Office of National Coordinator (ONC) has enjoyed the fanfare of announcing new rules at major conferences, but that was not the case during the recent ONC’s 2020 Annual Meeting. The 21st Century Cures act was passed with wide bi-partisan support in December of 2016. The Proposed Rule has been out for nearly a year now. Apparently it is still stalled in review at the Office of Management and Budget (OMB).


Nevertheless, there was a lot of activity at the conference and some interesting initiatives for interoperability in healthcare that continue to move forward.


Some highlights:

HHS Secretary Alex Azar was delayed due to urgent high-level discussions with Chinese government officials and others about the Corona (not to be confused with the beer) virus. When he spoke, though, his message was a powerful one regarding information blocking,

“Glad to speak at the ONC 2020 Annual Meeting this morning. Patients need and deserve control over their records; interoperability is the single biggest step we can take toward that goal."

He also said "Scare tactics are not going to stop the reforms we need" – apparently taking a shot at Epic’s threatened lawsuit.


Patients’ rights to their data and empowering patient data access were perhaps the most common examples of interoperability in healthcare. These topics were discussed by many participants from various perspectives. The discussion that most resonated with me was Grace Cordovano’s impassioned plea for patients and patient advocates’ access to their electronic health records.