As interoperability is stymied by providers who don't want to share their patients' data because they fear competition and vendors who are afraid of the same thing and have closed off their systems, patients are stepping in.
"The requirement to exchange information is not consistent with our idea of market competition," Blumenthal said. "We believe that, on the one hand, healthcare should be like every other market, and people should be ferociously competing. On the other hand, we believe people should be acting like professionals and putting their patients' interests above their own."
Simply put, he said, these models can't co-exist.
Now that there are massive amounts of healthcare data, though, demand for access to it is increasing—and some of that demand is coming from patients themselves. "Patients have a right to an electronic version of their data," Blumenthal said. "Providers can just give the data to the patient," he said. "This is a backdoor way of short-circuiting the whole question of whether providers will exchange data."
Notably, Apple has taken this backdoor approach with its Health app. Not only are the data in the app technically interoperable, thanks to FHIR, they're also potentially longitudinal. That means providers can use the information to get a better picture of the patient's complete healthcare timeline—something that's harder to do in a single, limited EHR system.
Google (now Alphabet) tried something similar in 2008 with Google Health, a personal health record that was supposed to allow people to aggregate all their health records in one place. But data exchange troubles and a lack of demand thwarted the project. Similarly, Microsoft Corp. has tried to give consumers a personal health record with its HealthVault, launched in 2007. The service has been slow to take off, though.
Now, with Apple's entrance into health records, some expect Samsung to follow suit, encouraging the same kind of use for Android phone customers.
Letting Apple and patients do the legwork removes a lot of the burden of data exchange, Erskine said. When patients pull their own data, they necessarily are matched to the correct records, and they serve as the HIPAA authority. "If patients can do all that by themselves, all that overhead that's currently an impediment to the flow of clinical data goes away."
Traditional EHR vendors are working with Apple to make this possible. Those partnerships may expand. "If Apple had partnerships with institutions and Epic so that any Epic institution could work easily with Apple, you could imagine a new route to exchange for Epic clients," Blumenthal said. That route would be the patient.
The federal government, too, has its eye on the patient as a means of data exchange. With the new proposed rule, regulators are building on MyHealthEData, an initiative announced by CMS Administrator Seema Verma in March to give patients more control over their own health information by putting it on any device.
"It's almost as though we've come full circle to the idea of the smart card," said John Kelly, principal business adviser for software firm Edifecs, referring to the idea of a physical card that would hold a patient's medical history and let providers update that information.
"When the patient becomes the agent of interoperability, a lot of the other stuff becomes moot," Kelly said. "Now you've completely bypassed all the problems with the EHRs talking to one another. It changes the game completely."
If all goes according to plan, or at least close to it, these initiatives could help advance value-based care models, Kelly said. "If payers and providers and employer groups start sharing the information that would create value-based reimbursement models, that would drive real cost savings," he said.
These initiatives would also drive patient engagement. "You have this additional benefit that the patient is no longer a spectator of their record—they become the owner of that record," Erskine said.
The EHR market might ultimately look different, too. "If you democratize the information and the flow of it, then suddenly it's hard for a limited number of oligarchs to control the market," Kelly said.
Before that can happen, there are still technical and logistical kinks to be worked out. How, for instance, will patients get their information back into the EHR software on which health systems so heavily depend?
"The industry needs to integrate that back into a longitudinal care plan," Gresham said.
Meanwhile, the industry can't forget provider-to-provider interoperability. "It's not a single solution that will solve it all," Gresham said. "You can't discount the value of having care providers being able to exchange data with other providers."
Some are skeptical that patient-directed interoperability will be a big deal in the first place, particularly some of those working in the EHR industry. "I don't think this push is going to make a big difference," said Dr. Charles Jaffe, CEO of standards organization Health Level 7, which oversees FHIR. "It will matter a great deal to a very small group of people."