As Healthcare Informatics reported last month, the Office of the National Coordinator for Health Information Technology (ONC) released a report in early April that highlighted what the federal healthcare IT agency referred to as “information-blocking.” As Senior Editor Gabriel Perna noted in his April 10 report immediately following the release of the ONC document, “The report’s authors and researchers detailed several examples of electronic health record (EHR) developers and health systems blocking health information sharing between each other. The act of information blocking occurs when an entity or person knowingly and unreasonably interferes with the exchange of electronic health information. Examples of this,” he noted, “are charging prices and fees for data exchange; creating terms of a contract that restrict individuals access to their health information; developing health IT in a non-standard way that dissuades information sharing; and developing health IT in a way that locks in information.”
The ONC cited examples in its report of anecdotal evidence suggesting that “EHR application developers are breaking several of the rules in this regard,” Perna’s report noted. “Using interviews with people at regional extension centers (RECs), the authors detailed complaints from industry sources on how developers are charging fees that make it cost-prohibitive to send, receive, or export electronic health information stored in EHRs. Some EHR developers even charge a substantial transaction fee any time a user sends, receives, or queries a patient’s electronic health information, the report says. The variation in prices reported to ONC suggests that some are taking advantage of the situation.”
In announcing the availability of the report, National Coordinator for Health IT Karen DeSalvo, M.D. noted in a blog on the agency’s website that it is difficult to pinpoint concrete evidence of information-blocking. “The full extent of the information blocking problem is difficult to assess, primarily because health IT developers impose contractual restrictions that prohibit customers from reporting or even discussing costs, restrictions, and other relevant details,” she noted. “Still, from the evidence available, it is readily apparent that some providers and developers are engaging in information blocking,” she said.
Given all this, I read with interest a May 20 blog in Health Affairs online by Julia Adler-Milstein on this subject, because of the clear way in which she frames the dynamic tension taking place right now in the industry between the forces that would restrict information for profit or proprietary gain, and those that would advance it for the common good. As Adler-Milstein, who is an assistant professor of information in the School of Information and an assistant professor of health management and policy at the School of Public Health at the University of Michigan, states very bluntly in her blog, “When it comes to sharing electronic patient health information, public good should trump private gain. While it may seem like an obvious statement, it represents a tectonic shift in the narrative surrounding health information exchange,” or HIE.
As Adler-Milstein notes, “For more than a decade, our federal strategy has largely left HIE to the market under the assumption that, if there is benefit to be created (and estimates suggest that there is), we should see the emergence of ways to capture that benefit. In practice, this means that HIE efforts have sprung up in various health care markets across the country, and where public money has been spent on HIE (largely at state and community levels), it has come in the form of one-time start-up funding, not a commitment of ongoing support or regulatory mandates for HIE participation.”
Here’s where Adler-Milstein really scores a home run on this, in my view: “What has been substantially underappreciated, however,” she writes, “is the fact that, for the key actors needed to enable HIE to occur—provider organizations and vendors—there might be more benefit, or at least more certain benefit, from not doing so. And as a result, these actors may behave in ways that interfere with the free-flow of patient information that is needed to improve health and health care.”
Instead, she says, “With the release of the information blocking report, which was produced in response to a 2015 Omnibus bill request that introduced the term ‘information blocking,’ ONC makes plain that this behavior will no longer be tolerated. This enormously exciting development means we might see real progress after decades of investment that has failed to convert into sustainable approaches to robust HIE. The key to such progress, however,” she warns, “lies in how well we can identify when information blocking is occurring. This will not be easy.”