One of my readers, Tim McLung, did me a huge favor recently by answering a question I posed in my recent post Who Owns Your Data? I asked if anyone had seen some work done in this area about data ownership and Tim left a comment pointing to the recently completed report from AMIA entitled “Toward a National Framework for the Secondary Use of Health Data“. Thanks, Tim.
The document doesn’t answer all my questions but it’s a pretty good start because there are numerous recommendations. Here’s introduction from the executive summary:
Secondary use of health data refers to non-direct care use of personal health information (PHI), including but not limited to analysis, research, quality and safety measurement, public health, payment, provider certification or accreditation, and marketing and other business (including strictly commercial) activities. Secondary use of health data can enhance health care experiences for individuals, expand knowledge about disease and appropriate treatments, strengthen understanding about the effectiveness and efficiency of our health care systems, support public health and security goals, and aid businesses in meeting the needs of their customers. Yet, access to and secondary use of data poses complex ethical, political, technical, and social challenges. Many of the issues surrounding the secondary use of health data are not new. These issues are however increasingly critical and complex in light of public and private sector activities that are expanding the volume of data available to be used and the availability of tools to access that health data. The lack of coherent policies and practices for the secondary use of health data presents a significant impediment to the goal of strengthening the U.S. health care system. A national framework for the secondary use of health data that includes a robust infrastructure of policies, standards, and best practices is needed to facilitate the broad and repeated collection, storage, aggregation, linkage, and transmission of health data with appropriate protections for legitimate secondary use.
If anyone else knows about similar work, please let me know since it’s an area I’m quite interested in.