PCAST – Is ONC Embracing Health Information Exchange from the Patient Perspective?

ADRIAN GROPPER

Privacy has always dogged the quest for practical health information exchange. PCAST marks the second (after the Privacy & Security Tiger Team) real effort by ONC to get ahead of the privacy problem with technology that allows the patient granular control over both the information they share and, more important, how that information is aggregated across multiple providers.
PCAST represents a major shift in health information exchange architecture on two fronts. First, it abandons the complex and problematic registry model for health information aggregation. Eliminating it solves the thorny problem of jurisdiction over the registry by keeping the providers that are directly in contact with and responsible to the patient in charge. Second, it allows the patient to control how their private information is discovered and aggregated. PCAST allows the patient to voluntarily specify their preferred ID that they control – for example an email address – in the same way that they can choose the credit card they use (or cash) to protect a sensitive transaction.

Patient portals to the EHR are showing slow but steady growth. These portals are the primary digital interface to the patient and the obvious choice for enabling patient-centered health information exchange proposed by PCAST. An early, fabulous example of extending the patient portal for health information exchange is the Markle Foundation’s Blue Button initiative that allows patients and their agents to download health records from VA, CMS and DOD systems.

The Blue Button experience can help us plan the implementation of PCAST from the patient perspective and finally get in front of the privacy issues to achieve a breakthrough in HIE. In addition, the National Health Information Network Direct Project is well on its way to providing patients with a voluntary identity that they control.

Here’s one example of PCAST compatible health information exchange:

1. Patient logs into the EHR patient portal
2. Patient sees the information available for health information exchange
3. Patient chooses all, some or none of the items
4. For each item, the patient checks off access privileges such as for emergencies, licensed clinicians, research, PHR, and specified Direct Project address destinations.
5. For each item, the patient checks off ID preferences to be used for finding and aggregating her health records. The choices could include the name and DOB she gave the provider, her cell phone number or her Direct Project address.

This 5-step process can be significantly automated and simplified by offering appropriate defaults linked to clear explanations. Groups such as Markle Foundation and the Center for Democracy & Technology can help craft best practices for consumer engagement that serve clinicians and the public interest as well.

The PCAST patient portal perspective is obviously just one aspect of patient-centered health information exchange. Much remains to be said about presenting aggregated information to doctors, the standards to be used to track the legal and authoritative source or provenance of information, the role of PHRs in aggregating information and how the patient can conveniently see “what is out there about me?” and correct errors or omissions.

PCAST innovation is not about documents and standards. It is a turn away from faceless bureaucratic registries and coercive identity management practices toward an architecture designed for today’s Internet with the kind of strong security foundations that characterize the Direct Project and enlightened consumer-engagement practices that created the Blue Button.

PCAST is a significant new approach. It comes at a critical junction between the EHR-foused Stage 1 of meaningful use and the interoperability-focused Stage 2 with its aggressive 2013 deadline. Based on the rapid success of HHS work on the Direct Project, I see an opportunity for similar leadership toward PCAST as a simple, scalable and patient-friendly health information exchange architecture.

Adrian Gropper, MD is a founder of MedCommons and an advocate for patient-centered technology in health care.