Few patients access their EHRs, but it’s not for lack of interest

Why do so few patients access their medical records electronically? It’s not because they don’t want to do so, write patient advocates Christine Bechtel, Lygeia Ricciardi, Dave deBronkart, Casey Quinlan, and Donna Cryer, in a recent Health Affairs blog. Patients who try to access their electronic medical records face significant bureaucratic obstacles, because hospitals and electronic health record companies have not been pushed hard enough or given enough incentives to make digital health data more easily available to patients.

The GetMyHealthData campaign, a consumer-led campaign to help patients request access to their medical records and record their experiences, found that patients who want to access their data face many obstacles. Providers rarely offered digital options for medical records, insisting instead on faxing patients their records or sending them a CD. Other patients were slapped with fees that were unaffordable, unreasonable, and illegal.

Why are there so many roadblocks to patients getting their own data? One reason is that the Centers for Medicare and Medicaid Services did not require hospitals to do much to help patients access their records. Only one patient had to access their records online for an organization to get financial credit under the CMS “Meaningful Use” incentive program. This has allowed many providers to create the capability for patients to access their records, but never promote it, write Bechtel et al.

The limited incentives offered to health providers and EHR vendors to make health data accessible is not near enough to overcome a system that by design discourages data sharing. According to a former national coordinator for health information technology, asking health care leaders to exchange data is like “asking Amazon to share their data with Walmart.”

CMS is finalizing new rules (against strong industry pressure) to make EHRs more accessible and interoperable by requiring Open APIs. Until that happens, Bechtel et al. offer several potential solutions to the problem of difficult patient access to EHRs:

• Health providers should switch to EHR with all Open APIs as soon as possible (don’t wait for CMS to require it!).
• Institutions that hold health data should make sure email is a delivery option on their HIPAA records request form.
• CMS should create comprehensive privacy rules, so that consumers can trust apps and developers to not share their data.
• CMS should promote value-based care models, that provide business incentives for data-sharing and interoperability. “If health care incentives depended upon better health outcomes, care providers and the infrastructure that supports them would have to figure out ways to share data, not only among providers, but with consumers, who play a critical role in shaping and maintaining their own health,” the authors write.   

Finally, a national health information network, which institutions could opt into, would make EHRs interoperable across systems and regions. This “public option” would take significant efforts from the government, but would relieve local communities of the burden of building their own health information networks.