On June 12, 2014, Senators Wyden and Grassley issued a letter requesting comments on ways to enhance the availability and usability of health care data, while also maintaining and protecting patient privacy. They key areas that stakeholders were requested to provide input on were:
1. What data sources should be made more broadly available?
2. How, in what form, and for what purposes should this data be conveyed?
3. What reforms would reduce the unnecessary fragmentation of health data? What reforms would improve the accessibility and usability of health care data for consumers, payers and providers?
4. What barriers stand in the way of stakeholders using existing data sources more effectively, and what reforms would overcome these barriers?
Comments were due to the Senate by August 12, 2014.
The Robert Wood Johnson Foundation (RWJF) offered its comments in response to the Wyden-Grassley letter:
1. RWJF recommended that people should have access to as much data from as many sources as possible. Specifically, data from electronic health records, Medicare data, private insurance claims data, data about community and social determinants of health, and patient generated data should be made more broadly available.
2. RWJF commented that having a robust health data infrastructure, as stated in the JASON report would be useful. The health data infrastructure should be led by the federal government and be developed in collaboration with other stakeholders.
3. RWJF suggests that there should be a national discussion over data ownership issues, and that one particular sector should not block the release of key pieces of health data.
4. RWJF also commented that individuals must trust that their health data is secure.
Click here to view the Wyden-Grassley Letter
Click here to view RWJF's Comments in Response to the Letter
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