- A patient advocacy group is urging federal regulators to move forward in finalizing rules that would make it easier for patients to access their own healthcare data, according to a recent letter from the Society of Participatory Medicine.
- The group's post comes on the heels of a letter sent by Epic CEO Judy Faulkner to major health systems, urging them to oppose the data-sharing rules as drafted, according to CNBC.
- Faulkner has argued the proposed CMS and Office of the National Coordinator for Health IT rules threaten patients' privacy and would allow third-parties access to their data without consent.
Patients have long struggled to gain access to their medical records in a format that is easily accessible (and easily shared with other providers). Siding with patients, regulators have drawn up proposed rules to discourage information blocking and to put patients in the driver seat when it comes to handling their medical data.
However, the proposed fixes released nearly a year ago have fueled intense debate within the industry, drawing recent pushback from EHR vendors like Epic that stand to lose business if tech giants like Apple and Google get more into medical records.
Advocacy groups like the Society of Participatory Medicine are urging regulators to make the long-awaited rules a reality, but warned: "Any solution that doesn't work for us is a policy failure." The letter was made public this weekend, just before ONC's annual meeting began Monday. The interoperability rules are sure to be a hot topic.
In the letter, the advocacy group detailed how the lack of access to data has hindered patients' health, citing how some patients experienced delays in care when providers didn't have ease of access to prior history and records.
The letter also details how patients are frustrated over being forced to use multiple patient portals instead of having one place to house all their information. Also, garnering criticism is when patients are charged fees by providers to access their records, according to the letter outlining the advocacy group's concerns.
Over the weekend, the group chastised Epic for its latest move in attempting to sway health system leaders to oppose the rules. The letter reacted to Epic's campaign by stating: "How dare they suggest that they should be the beneficiary of first concern!"