Patient expectations of health data research subject of CLEAR-NHC partnership
In August CLEAR entered into a contract with the National Health Council to work with patient groups to understand their expectations about how data about their health care should be used in subsequent research. The National Health Council represents most of the nation's patient advocacy organizations, and has been a partner in CLEAR's previous NIH-funded work on enhancing the responsible use of data for medical research. There is growing evidence that patients, especially with chronic or life-threatening conditions, expect that information about their experiences will be used in future research, an expectation that is frustrated by expanding federal and state limits on researchers accessing patient data, even with name and similar identifying information removed. The National Health Council's work should be completed by the end of December.