Deven McGraw, Health Privacy Project Director, Center for Democracy & Technology
Project HealthDesign Director Patti Brennan recently blogged about the report issued by the President’s Council of Advisors on Science and Technology (PCAST), which set forth recommendations to facilitate more effective use of technology for health information exchange. In the post, she praised the more expansive vision of exchange promoted by PCAST and noted the absence of a robust discussion on the need to include patient-generated data as part of this broad vision.
Efforts to analyze the PCAST report and determine how its vision of greater health data liquidity can be achieved have begun in earnest. The Health IT Policy Committee (HITPC) has established a PCAST Report Workgroup, which held a day-long public hearing on Feb. 15.
Stakeholder groups testifying included consumers and patients, providers, technology experts, and health information exchanges. Nearly all agreed with the goal of facilitating more widespread electronic exchange of health data for treatment and secondary data uses like public health and research. But stakeholders also raised a number of concerns about some of the recommendations in the report, including:
- fears that exchange of information at an “atomic data element” level would rob the information of the context necessary for providers and researchers to understand it;
- concerns that providing patients with very granular choices about how their data is shared could be difficult for patients and providers to manage;
- uncertainty about whether the PCAST recommendation for a “universal exchange language” would disrupt (or build on) existing data standardization efforts; and
- questions about whether the designated approach to protecting privacy – tagging data elements with meta data about privacy preferences and other applicable data sharing constraints – would be workable and effective.
The key task for the PCAST Workgroup, the federal advisory committees, and ultimately HHS will be to find a path forward to promote the PCAST vision in a way that builds on work that has been done in the past and effectively responds to implementation concerns raised by stakeholders. Here are a few possibilities:
- Ramp up the requirements for health information exchange in Stages 2 and 3 of meaningful use, including active exchange of data with patients.
- Adopt and implement standards that will allow patients and providers to exchange computable data with one another no matter which EHR, PHR or software application is being used.
- Develop the infrastructure for a query-response model of health data exchange that is based on the needs of the patient.
- Pilot privacy-enhancing technologies (including but not limited to the meta data tagging approach recommended by PCAST) and research both their efficacy and impact on care.
This first year of the meaningful use program provides us with an opportunity to test the efficacy of current strategies for effective use of health IT to improve health and health care. The PCAST Report provides yet another opportunity to consider whether these efforts are headed in the right direction and how we can accelerate progress toward the goals we share.
This week, those interested in HIT have another opportunity to influence future public policy in this arena: HITPC is soliciting public comments on proposed Meaningful Use Stage 2 objectives through Friday, Feb. 25.