Medicare and Medicaid claims data are a uniquely valuable, rich source of health information available to the NIH research community for observational and interventional research. As an example, the National Cancer Institute (NCI) and the Centers for Medicare and Medicaid Services (CMS) have joined forces to link the Surveillance, Epidemiology, and End-Results (SEER) data with extensive medical and patient-reported health information. Another example – researchers have successfully linked data from the Interagency Registry for Mechanically Assisted Circulatory Support with Medicare claims data. And one more – researchers have explored the potential value of linking Medicare claims data with an NIH-funded clinical trial. What about going a step further – enabling patients greater access to health information and giving them the ability to decide how their data might be used – including as part of ongoing research?
On February 11, 2019, The Center for Medicare and Medicaid Services (CMS) released a proposed rule to advance interoperability and patient access to health information. The proposed policy changes in the rule support the goals of the MyHealthEData initiative, which aims to promote electronic data exchange and care coordination in the healthcare system, and ensure that CMS beneficiaries have full access to their own health information and the ability to decide how their data will be used.
In addition, CMS released two RFIs to obtain feedback on 1.) interoperability and health IT adoption in post-acute care settings, and 2.) the role of patient matching in interoperability and improved patient care.
CMS will accept comments on the major provisions in this proposed rule and the RFIs through May 3, 2019 at https://www.regulations.gov/document?D=CMS-2019-0039-0001. We encourage you to view and share the RFIs and offer your input.