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We propose to formally model and analyze 6 architectural designs for the Nationwide Health Information Network (NHIN) and 3 base case designs, and to then work with industry partners to experiment with 3 vetted designs in real-world settings of health information exchange. Additionally, we propose to produce scientific results from 6 critical crosscutting investigations and integrate results into the designs as appropriate. Outcomes of our work include a summary chart, where each row is a design, and each column is a qualified requirement, and the values in the cells are scientifically derived. Having scientific results to inform and educate discourse is the best assurance to America of a trustworthy NHIN.
A necessary condition for establishing trust in the NHIN is tackling privacy while sharing data widely. We propose to tackle privacy concerns in the NHIN through technology design. Support for our approach comes from recent efforts of privacy commissioners internationally and from 9 years of experience our Director, Latanya Sweeney, had in the Data Privacy Lab at Carnegie Mellon University, which suggest that in seemingly grave technology-privacy clashes, technology design solutions are typically possible and that such solutions tend to be superior to policy and technology add-ons done in hindsight.
Other necessary conditions for establishing trust in the NHIN requires building: (1) confidence that using the NHIN will not be disruptive to workflow or work processes; (2) reliable NHIN mechanisms for detecting improper uses and holding offenders accountable; (3) authentic information structures that deliver accurate and complete data originating from a known reputable source; (4) warranty frameworks that only individuals who have proper authority to access information will be able to do so; (5) assurance instruments that ensure no harm will come to individuals from secondary data sharing; and, (6) enforceable computer readable policies that are as expressive as the regulations and laws that govern health information exchange. These necessary conditions describe our 6 crosscutting investigations. We have 18 industry partners and 12 advisors, representing the full spectrum of stakeholders to work with us.