During yesterday’s meeting of the Health Information Technology (HIT) Policy Committee, there was a critical missing component of an otherwise excellent presentation by Deven McGraw and Micky Tripathi, C0-Chairs of the Health Information Exchange (HIE) Workgroup. Committee members Adam Clark (from the Lance Armstrong Foundation) and Neil Calman (from IxAction Alliance member the Institute for Family Health) brought up the critically important question: Where is the patient in all these diagrams about the exchange of health information?

After Clark first pointed out the oversight, Calman framed a few relevant important questions:

• Where’s the place on the diagrams (explaining the transmission and exchange of data among systems) that patients plug into?
• How do you create a meaningful view into the data that are being passed around?
• What should those views contain?

McGraw and Tripathi had an enormous task in trying to lay the groundwork for a discussion about the relationship between HIE and meaningful use of HIT. But without attention to consumer needs for health information up front, even successful technical transmission of data from one entity to another may not lead to effective exchange of information that is meaningful to the end-users (most notably clinicians and patients).

Charles Kennedy (from WellPoint) built further on this issue: If we just connect data from System A to System B, it will produce data that is basically just transactional in nature, which doesn’t provide useful decision support to clinicians and patients. In order to create meaningful information for end-users, we need some sort of data infrastructure.

Kennedy, Clark and Calman have circled in on one of the most pressing issues in HIE. A few years back, I wrote an Issue Brief for the California HealthCare Foundation called, “Lost in Translation: Consumer Health Information in an Interoperable World.” The idea is basically to think about what HIE infrastructure looks like when you start from the user-centered design perspective. That is, we should begin by asking questions about what meaningful information do clinicians and patients need to manage care better and more efficiently, and then come up with the technical infrastructure that supports exchange of that information.

If we don’t approach HIE that way, we’ll end up with enormous investment of resources to produce data that doesn’t facilitate substantially better or more efficient care.