Can promised benefits of EHRs still be attained?

As part of the Health Information Technology for Clinical Health (HITECH) Act of 2009, $35 billion in funds were targeted to facilitate the purchase of electronic health records (EHRs) by doctors and hospitals. One of the arguments for including those funds was that digitizing the health data of millions of Americans would enable the data to be used for public and population health-related research.

Fourteen years later, with that goal still far from being achieved, it’s fair to ask whether it was realistic to start with. After all, accessing the vast quantities of data potentially available in EHRs would require overcoming numerous challenges, from staying complaint with HIPAA privacy rules to the technical obstacles of transferring the data.

“Many people don’t realize that working with health data is hard,” says Joshua Vest, PhD, MPH, director of the Center for Health Policy at Indiana University-Purdue University Indianapolis and a researcher at the Regenstrief Institute. “The data is not always truly representative of the population because it’s a reflection of who can access care and who can’t, who documents the care, and what gets paid for. Collecting it electronically opens the potential for aggregation but doesn’t make it immediately possible or remove all those other difficulties.”

Micky Tripathi, PhD, MPP, the National Coordinator for Health Information Technology, says the creators of the HITECH Act, may not have anticipated the privacy issues associated with using patient data for research.

“If you’re going to do research using identified data you need patient consent. And consent is complex from a policy and technical perspective and hard to scale,” Tripathi says. And while data can be de-identified, he adds, doing so creates a new set of challenges.

“HIPAA [the Health Information Portability and Accountability Act] requires you take out 18 fields of data,” Tripathi explains. “And once you’ve removed those fields you lose the richness and specificity you need to answer questions like, was a person who just tested positive for COVID vaccinated? If so, which vaccine did they get? Once you’ve de-identified data you’ve lost visibility into those kinds of details.”

Tripathi says creating a digital warehouse for research purposes that contains everyone’s health data was, and remains, unrealistic due to privacy concerns and the sheer quantity of data involved. A more effective approach, he adds, is to continue developing an “open architecture research ecosystem” that will enable researchers to look for and aggregate the information they need from existing data repositories.

Nevertheless, some policymakers think the government delayed the possibility of using EHR data for public health research by not including interoperability among the criteria for qualifying for the Meaningful Use program from the start. Seema Verma, administrator of the Centers for Medicare and Medicaid Services from 2017 to 2021, calls the omission a “lost opportunity.”

“When those (Meaningful Use) regulations were developed they weren’t written around interoperability,” she says. “And once those (EHR) systems were built it was a lot harder to make them interoperable.”

But David Blumenthal, MD, MPP, the National Coordinator for HIT from 2009 to 2011 says there were good reasons for not requiring interoperability in the first phase of Meaningful Use.

“The idea was you had to operate before you could interoperate,” he says. “You had to get people up and running on the systems and get the records in place. Then you could require that they start exchanging it. But what we didn’t anticipate was the extent to which health care institutions would resist information exchange requirements because of the business implications.

“I think that, as is often the case with public health policy, we underestimated the difficulty of achieving the goals we were aiming for,” Blumenthal adds. “But I’m confident that the promise will be realized, if not as quickly as we’d hoped.”