Creating the Foundational Building Blocks for the Learning Health Care System: Data Access Standards for Electronic Health Records (EHRs)

Empowering patients by re-designing the Centers for Medicare & Medicaid Services Blue Button to enable it as a ‘Data-as-a-Service’ platform.
Agency
  • Centers for Medicare and Medicaid Services (CMS)
Start Date
  • 10/1/2014
Functionality
  • Collection of Participant-Provided Information
  • Use of Clinical Data for Research

 

STATUS: Completed Project

BACKGROUND

“Blue Button” is a service that allows patients to access their own health information in electronic form. CMS established a Blue Button platform in 2010 to give Medicare beneficiaries access to their own health information: however, this initial service had limited functionality and scalability, making it difficult for beneficiaries to use and share their health information.

PROJECT PURPOSE & GOALS

To realize the full potential of sharing Medicare claims with beneficiaries, CMS needed to make data available to beneficiaries in a scalable and patient-friendly format, i.e., a Data-as-a-Service platform. In addition, the Blue Button platform would be redesigned to allow 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. The overall goals of the one-year initiative were to award a contract for the design and implementation planning services.

Project Objectives:

  • Identify and collaborate with the U.S. Department of Health and Human Services (HHS) internal stakeholders, the private sector developer community, and third party services to define functional requirements.

  • Develop a plan to improve Blue Button, including implementation strategy and roadmap for a ‘Data-as-a-Service’ Platform.

PROJECT ACHIEVEMENTS & HIGHLIGHTS

The overall goals were successfully addressed and stakeholders, including those from HHS, the private sector developer community, and third party services, were engaged. 

  • Via the Blue Button Pledge Program, more than 450 organizations are made personal health data available to Americans via their health care providers, health insurance companies, labs, and drug stores; building tools to make health information actionable for patients; and/or spreading the word about why all this matters.

  • Several campaign materials were created to raise awareness about Blue Button and how consumers can use this resource to exercise their rights and empower themselves with health data.

PUBLICATIONS, PRESENTATIONS, AND OTHER PUBLICALLY AVAILABLE RESOURCES

Resources:

RELATED PROJECTS

Below is a list of ASPE-funded PCORTF projects that are related to this project

Improving Beneficiary Access To Their Health Information Through An Enhanced Blue Button Service – This project built on the project entitled, “Improving Beneficiary Access to Health Information: A Plan to Enhance “Blue Button”. Utilizing the Fast Healthcare Interoperability Resources (FHIR) framework to ensure data is in a structured format that can be accepted by a wide range of applications, the Blue Button on FHIR (BBonFHIR) interface put Medicare beneficiaries in control of connecting their data to third party applications and services they trust. In this model, beneficiaries are empowered to select participation in research based on their preferences (e.g., enrolling in a genetic cancer research study because of a familial history of cancer). This dramatically simplified the acquisition of beneficiary claims data to support beneficiary participation in clinical research studies. Once completed, the BBonFHIR Service application program interface (API) allowed researchers to selectively pull beneficiaries’ Medicare part A, B, and D claims data specific for specific research needs.

PCOR: Privacy and Security Blueprint, Legal Analysis and Ethics Framework for Data Use, & Use of Technology for Privacy – Patient level data are essential to understanding and improving health outcomes. These data must be made available to researchers in a way that ensures the protection of patient privacy while providing sufficient granularity to allow meaningful research questions to be assessed. However, current laws and policies around the use of patient level data are nuanced and sometimes conflicting, creating confusion for researchers, providers, and patients. This project was a collaborative effort between the ONC and Centers for Disease Control (CDC) to conduct research and create resources to improve the privacy of patients and their data.