Technologies for Donating Medicare Beneficiary Claims Data to Research Studies

Allowing Medicare beneficiaries to donate their medical claims data for scientific research studies.
Agency
  • Centers for Medicare and Medicaid Services (CMS)
  • National Institutes of Health (NIH)
Start Date
  • 9/7/2017
Functionality
  • Linking of Clinical and Other Data for Research
  • Use of Enhanced Publically-Funded Data Systems for Research

 

STATUS: Active Project

BACKGROUND

The Centers for Medicare and Medicaid Services (CMS) established a Blue Button platform in 2010 to give Medicare beneficiaries access to their own health information. In 2014 CMS was awarded a PCORTF project to develop a plan to redesign the Blue Button to enable it as a Data-as-a Service platform.  In 2016, a second CMS PCORTF project was awarded to implement the Data-as-a-Service platform and to utilize the Health Level Seven International (HL7) Fast Healthcare Interoperability Resources (FHIR) framework.  This allows third party services to build computer applications (apps) and other tools that can easily collect, present, and share the data—in a manner that ensures privacy and security of the data—which would make the data more actionable for patients.

PROJECT PURPOSE & GOALS

CMS will work with the National Institutes of Health (NIH) to leverage the Sync for Science (S4S) and Blue Button API (BB API) programs to enable Medicare beneficiaries to donate their medical claims data for scientific research studies using S4S data donation workflow.

The project objectives are to:

  • Make source code and documentation publically available
  • Monitor the BB API system for performance and system issues and generate notifications
  • Update the Sync for Science reference implementation guide to include CMS Blue Button API
  • Make documentation, guides, and reference tools publically available
  • Create and run Developer/Application Validation process to support operations
  • Create a final report of the pilot, suitable for ASPE PCORTF to publish on their website
  • Provide digital and printed materials to facilitate outreach and education on BB API and Sync for Science to developers and end users