Clinical Data as the Basic Staple of Health Learning: Creating and Protecting a Public Good

Excerpt

The Clinical Data as a Basic Staple of Health Learning: Creating and Protecting a Public Good publication is a summary of the proceedings of the sixth workshop in the Learning Health System series. Held on February 12–13, 2008, this workshop was designed to explore leading perspectives on clinical data as a transformative agent in health care, as well as possible strategies for their implementation in the delivery of evidence-based care. Issues motivating the discussion include:

1. Discovering what works best in medical care—including for whom and under what circumstances—requires that clinical data be carefully nurtured as a resource for continuous learning.

2. Transformational opportunities are presented by evolving large and potentially interoperable clinical and administrative datasets.

3. Clinical data are recorded and held in multiple activities and many institutions, including medical records, administrative and claims records, and research studies.

4. Public policy and public awareness lag behind the technical, organizational, and legal capacity for reliable safeguarding of individual privacy and data security in mining clinical data for new knowledge.

5. A significant challenge to progress resides in the barriers and restrictions that derive from the treatment of medical care data as a proprietary commodity by the organizations involved.

6. Even clinical research and medical care data developed with public funds are often not available for broader analysis and insights.

7. Broader access and use of healthcare data for new insights require not only fostering data system reliability and interoperability but also addressing the matter of individual data ownership and the extent to which data central to progress in health and health care should constitute a public good.