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A panel discussion digs deeper on patient access to health data.
With new information blocking rules on the way, access to more patient data will be inevitable in just a few short months. But what does that mean for patients and providers?
At Academy Health’s Datapalooza, a panel discussion titled “The Sky Is (Not) Falling: Addressing fears about patient access to health data” dug deeper into the idea of whether clinicians and patients were ready to have access to more data. The panel discussion, moderated by Liz Salmi, senior strategist of research dissemination for OpenNotes, included Deven McGraw, J.D., M.P.H., of Citizen Corporation, Anshu Abhat, M.D., M.P.H., of UCLA David Geffen School of Medicine, Donna Cryer, J.D., founder and CEO of the Global Liver Institute, and Cait DesRocher, Dr. P.H., of OpenNotes.
In April, new information blocking rules will go into effect that will give patients more access to their health data. Before this, HIPAA gave individuals the broad right to have access to their health information and everything in their medical record. But it required patients to ask for their information.
Congress stepped in with the 21st Century Cures Act to make sure Americans could have their information and were empowered without having to request it and wait for time to pass. Under already established rules by ONC, EHRs that doctors and hospitals are required to connect to patient/consumer apps via open standard (FHIR) APIs, including consultation notes, discharge summaries, history and physical, imaging narratives, lab report narratives, pathology report narratives, procedure notes, and progress notes.
The information blocking rule includes potential penalties for failure of providers, EHR vendors, health information networks/health information exchanges to provide patients access to their electronic health information. Physicians and hospitals must turn on existing EHR features that provide more data to patients via portals and APIs.
While ONC stepped up big to provide more access to patient data, so did CMS. Provisions were already in place that provided incentive for giving access to data via APIs in certified EHRs. CMS also required hospitals to provide patient access as a Medicare condition of participation. Now, a new CMS rule requires health plans under CMS oversight to provide patients with claims and clinical data via FHIR APIs.
Cryer recollected on when OpenNotes was first a concept. Physicians had anxiety that patients would become hysterical and scared about their records. For the most part, none of the potential harms came true. Instead, patients asked fewer questions or better questions because they were on the same page as their physicians.
Patients are mostly excited to be able to find out their results, McCraw, added.
There can be real concerns with sharing the notes, Abhat, said. And because of such concern that “the sky is falling,” Abhat and her hospital delayed rolling out more patient data access initiatives.
“It’s a real feeling people have but because there is more experience now, we can lean into that experience when issues arise,” Abhat said.
There may need to be a cultural shift to help patients access their data. Physicians may need to help older patients learn what they are looking at and how to understand and make the most of the information, Cryer said.
“An app is not going to fix connecting patients and their data,” Abhat added. “Technology is a first step into opening up the pipes and making that connection even possible in the first realm of possibility.”
It’s important to take it into context. Who normally advocates for the patient? Who helps them access care? Health education teams who are trained in patient portals can be used to train patients on how to use such technology.
“We have to design with our communities and our communities are all coming from different places,” Abhat said.
There’s still a lot missing in how usable products are and we must tap into real human connections to make access to data more bridged.