September 13, 2011
De-Identified Health Data Have Characteristics of Quasi-Public Goods
UPDATE (10/21/11): Please read my follow-up post on this topic, which focuses on ethics and provides additional resources to consult.
Some of the examples … are of groups that have made the data they collect available to third parties essentially free of charge, usually out of altruism. That is wonderful, of course, but as a society we have not organized ourselves around altruism as a guarantee of any particular outcome. [In] the real-world, large clinical databases have an aspect of a quasi-public good because they are not 'pure' public goods in any sense." Dr. David Blumenthal, former National Coordinator for Health IT
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Cerner and many of our client institutions participate in de-identified databases that support observational and translational research. Such databases, called data warehouses, constitute a comprehensive source of de-identified, confidentiality-protected, real-world health data collected as a by-product of patient care. Cerner aggregates the data provided by participating facilities and uses stringent quality assurance processes to ensure the ongoing integrity of the information.
These data warehouse resources provide our clients with the ability to do many valuable things—for example, analyze a drug’s usage across diagnoses and major procedures, as well as by geographic region and hospital type. Additionally, clients can discover how and when clinicians use a drug or medical device and gain valuable insights into clinical decision making. To date, much of Cerner’s own use of the de-identified information has to do with three areas:
- Quantitatively measuring the safety of medications and health care procedures
- Conducting comparative effectiveness research on two or more therapies used in a given situation to see which is the safest, most effective and most cost-effective
- Discovering optimally efficient processes and patterns of health services delivery, to improve the quality and value of care
“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." American Medical Informatics Association (AMIA)
Participants in such data warehouses constitute a kind of de facto community and, through their efforts, enable the discovery and creation of things of value—for individuals, for groups and organizations and, more broadly, for the private and public sectors. All participants have moral standing, are deserving of respect, and have rights and duties—matters that are the province of ethics and ethicists, as well as of lawyers and regulators and others.
I’ve prepared a short essay on the ethics of de-identified electronic health record (EHR)-derived data warehouses, pointing out some considerations that have so far been overlooked in public policy-setting deliberations regarding secondary uses of health information. Please have a look at the essay and post a comment below or send me an email to tell me what you think.
Douglas McNair, MD, PhD, is president of Cerner Math, Inc., and one of three Cerner Engineering Fellows and is responsible for innovations in decision support and very-large-scale datamining. McNair joined Cerner in 1986, first as VP of Cerner’s Knowledge Systems engineering department; then as VP of Regulatory Affairs; then as General Manager for Cerner’s Detroit and Kansas City branches. Subsequently, he was Chief Research Officer, responsible for Cerner’s clinical research operations. In 1987, McNair was co-inventor and co-developer of Discern Expert®, a decision-support engine that today is used in more than 2,000 health care facilities around the world. Between 1977 and 1986, McNair was a faculty member of Baylor College of Medicine in the Departments of Medicine and Pathology. He is a diplomate of the American Board of Pathology and the American Board of Internal Medicine.