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: http://www.healthit.gov/policy-researchers-implementers/hitpc-hitsc-health-information-exchange-public-hearing