One of the thornier issues regarding the establishment of public Health Information Exchanges (HIEs) is how to manage consumer consent of personal health information (PHI) sharing. Today, there is no single standard approach across the US. Some states have an opt-in process, others an opt-out. Granularity of data shared, use cases for data sharing, etc. also vary widely from state to state. These are just some of the findings of an extensive report (92 pgs) that was published this week by HHS’s Office of the National Coordinator (ONC), the ones responsible for funding the multitude of state-led HIEs under ARRA as well as the National Health Information Network (NHIN).
The report looks at the consumer consent policies (and challenges to implement) in eight states as well as three countries based on interviews and an extensive amount of secondary research. While a tad long, there is some good information tucked inside the report if one spends the time to dig it out. A good place to start is the Appendix that provides an overview of the consumer consent policies in the various states (HIEs) profiled.
Do not be too surprised if findings and conclusions of this report end up directing future policy, particularly as it pertains to the NHIN as it struggles to define an overarching common data use agreement and self governance model for the sharing of PHI.