In 2012, Pennsylvania (PA) was granted federal funds, through the American Re-Investment and Recovery Act of 2010, to create a health information exchange (HIE). The principal purpose of the HIE was to enable the exchange of health data across the continuum of care. The primary goal was capture and exchange data generated in the clinical encounter. The enabling legislation also mandated secondary use of the data for public health purposes including: digital reporting of disease and electronic laboratory reporting and population level health interventions. PA state law restricts disclosure of Super Protected Data (SPD) including HIV/AIDS, mental health and substance abuse treatment. Restricted disclosure inhibits robust data exchange and hinders the public health uses of SPD in the PA HIE.
To evaluate and recommend policy solutions to enable exchange of SPD within PA’s HIE to fully achieve public health goals.
This policy project involved multi-faceted methodologies including comprehensive reviews of peer-reviewed literature on state law barriers to HIE on a national scale, legal research on the Pennsylvania Code to identify legal barriers to the PA HIE, analyses of existing state HIE program reports on other state solutions, and a political feasibility assessment of solutions based on the PA legislative history.
The literature review demonstrated a limited body of existing literature focused on either a technological or legislative approach. Legal research revealed that PA did not use a legislative approach to remove existing state law barriers to the HIE. Analysis of the PA Agency reporting showed that the Authority tasked with P3N construction did not mandate a technological approach either. Research of other state reporting showed a preference for legislative repeal of barriers to SPD exchange.
Legislative repeal of privacy protections for SPD is not politically feasible in PA. However, the PA eHealth Authority can use legal tools as a work around in participating provider contracts by requiring clear consumer notice of who can access SPD, and require a technological filter to give SPD extra protection, without legislative action.
Graham, JD, CIPP/US, Melanie Bork, "Policy and Public Health Implications for Exchange of Super Protected Data in Pennsylvania" (2017). Master of Public Health Capstone Presentations. Presentation 215.
Martha Romney, Jefferson College of Population Health, Thomas Jefferson University, Philadelphia, PA.