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.” 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. 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.
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.