HIEs are Beginning to Link Patients Directly to their Own Health Data

Posted August 18, 2009 by Lygeia Ricciardi 

Last month the eHealth Initiative (eHI) released its sixth annual survey of health information exchange and a report based on its findings, “Migrating Toward Meaningful Use: The State of Health Information Exchange.”

Among the findings is that the number of health information exchange initiatives (HIEs) continues to grow. According to the report, there are now at least 193 active initiatives, 57 of which are operational—an increase of nearly 40% over last year’s numbers. (Some HIEs refer to themselves as RHIOs or Regional Health Information Organizations.) An even greater level of growth is expected as a result of the stimulus package—the American Recovery and Reinvestment Act (ARRA).

Most HIEs are concerned primarily with the exchange of health information among health care providers, hospitals, pharmacies, and other members of the traditional health care system, such as health plans.

Interestingly, though, some—though still a small number—of HIEs have begun to include patients among those who can get access to electronic health information—in this case, to their own medical records. Fourteen HIEs have “technology available allowing patients to access their medical information,” according to eHI’s report. Most of these either have or are in the planning stages of implementing a patient portal.

What kind of access do these HIEs provide? In about half, patients can add “clinical” information to their records. Others only allow patients to comment on the existing record, or, in three cases, provide “read only” access.

Under the HIPAA Rules, physicians, hospitals, health plans, and other “covered entities” have long been required to give patients access to their own health information upon request, though until recently there were no provisions specifically requiring that such access be in an electronic form. (ARRA, which requires that patients be given electronic access by HIPAA covered entities that store the information electronically, doesn’t specify that the data be in any particular type of format.)

Independent personal health record (PHR) providers, by contrast, have platforms and services designed primarily to give patients access their own data for their own use—once they’ve figured out a way to get it into the PHR in the first place. But direct patient access to data though an HIE is still a fairly new development.

While the eHI report’s snapshot of patient access through HIEs is a far cry from Project HealthDesign’s vision of a world in which patients are able to both download their data from the health system in a “computable” form that lets them plug it directly into a variety of applications—and also send their own observations of daily living directly to their providers, it signals a positive step toward the kind of data liquidity on which that vision depends.

Though HIEs may never be the primary way patients access and download their data from the health system, any increase in patient access is a step in the right direction. See our previous discussion of this topic--and please feel free to weigh in.