Sara Koliner, Policy Analysis Project Assistant, Project HealthDesign National Program Office
On Tuesday, January 29th, the HIT Policy Committee and HIT Standards Committee hosted a joint hearing on health information exchange (HIE). The hearing, divided into four panels, assessed the current state of HIE through the testimony of a number of distinguished speakers and fostered discussion about what next steps the Office of the National Coordinator for Health IT (ONC) should take to address business, technical, and regulatory barriers.
Of considerable interest was the final panel, Consumer-Mediated Exchange, moderated by physician Paul Tang, who served as chair of Project HealthDesign’s National Advisory Committee. The panel featured testimony by Jeff Donnell, MaryAnne Sterling, Neal Patterson, and Alan Blaustein.
Jeff Donnell began with a salute to how far patient engagement has come in the past six years:
Meaningful Use Stage One placed patient engagement squarely on the map, and Stage 2 requirements -- including view/download/transmit and the modest five percent patient participation threshold -- have moved patient engagement from a check box item to a health IT strategy imperative.
The panelists touched on some issues that have been discussed among Project HealthDesign grantee teams. First, for patient generated data to be useful, it requires clinical buy-in: Consumers don’t just need easy access to their information, providers need to consume it. Jeff Donnell offered a memorable quote:
From a technical point of view, it’s not difficult. There’s policy and standards work, but much of it is education. We encounter providers that are so fearful of patient-generated data — but then we talk to them about, “how do you handle patient-generated data now? I mean you’re having a patient fill out a paper form in a waiting room, and then you’re having someone rekey it in, are you saying that that data collected in probably the worst possible environment is better than a patient bringing it in from multiple sources and making it accessible? . . . A lot of it is fear of the unknown. I believe that that is where the ONC can help.
The speakers addressed concerns over the interaction between the Health Insurance Portability and Accountability Act (HIPAA) and data transmitted outside of the EHR system. In varying contexts, participants called for the creation of mechanisms to allow for the flow of information among consumers, caregivers and healthcare providers.
One salient point that came up frequently was the notion that consumers are the keys to solving the barriers to interoperability. Aside from technical concerns, current business often models impede the movement of data because data liquidity might appear to harm profitability. However, if individuals are given control of their own information, a new business model might arise – One in which consumers are part of the health care system rather than just being served by the system.
As Alan Blaustein pointed out, it is important that the consumer be engaged. When asked what opportunities and challenges existed to enable consumer-mediated exchange in the next two years, he responded:
The greatest challenge of the consumer-mediated exchange in the next two years is a clear communications strategy that explains the value to the healthcare consumer. The consumer-mediated exchange must be communicated as a first step to the overall engagement of the healthcare consumer in their healthcare experiences. Otherwise these efforts will be simply seen as an additional burden on the healthcare consumer, particularly if the healthcare consumer now thinks that she is primarily responsible for moving a particular file from Point A to Point B with nothing more at stake.
Furthermore, the culture of our healthcare system will need to begin changing and the healthcare consumer must be invited into the conversation. Countless times we get calls at CarePlanners from clients whom the system has largely ignored, where their facts and opinions were not considered. That requires far more change and self-evaluation than can possibly be rectified in the coming two years.
This isn’t to say that consumer-mediated exchange is a replacement for HIE. Rather, it should serve to complement and accelerate the entire HIE expansion, creating a combined synergy that’s essential to improving healthcare nationwide. Read testimony transcripts and listen to the entire hearing here: https://www.healthit.gov/policy-researchers-implementers/hitpc-hitsc-health-information-exchange-public-hearing