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Human-Centered Design Study on Federal Data Access and Acquisition Processes of CMS Data

Human-Centered Design Study on Federal Data Access and Acquisition Processes of CMS Data
Agency
  • Centers for Medicare and Medicaid Services (CMS)
Start Date
  • 5/01/2022
Functionality
  • Linking of Clinical and Other Data for Research

 

STATUS: Active Project

BACKGROUND

Federal data linkage across Department of Health and Human Services (HHS) agencies allows for the creation of robust data resources that support patient-centered outcomes research (PCOR). The Centers for Medicare & Medicaid Services (CMS) makes data that contain personally identifiable information/personal health information available to researchers at federal agencies and other stakeholders as allowed by federal laws and regulations and CMS policy. CMS has standard processes for all researchers to request the data, including entering into Data Use Agreements). Researchers at federal agencies often must complete supplemental agreements, such as an Information Exchange Agreement and/or an Interagency Agreement.

During the COVID-19 pandemic, there was an increase in the number of federal agencies submitting complex data requests to CMS, demonstrating a need to update the standard data request process. CMS also anticipates an increase in data requests from other federal agencies to facilitate data linkages and support PCOR. Under this project, CMS will evaluate the current process and use the findings to inform design of a more streamlined and user-friendly process that meets federal agency partners’ needs. This project will leverage the human-centered design (HCD) methodology to develop key opportunity areas and prototype that will be used for testing and informing the guidance document for federal agencies in requesting CMS data. The expected outcome is more efficient access to CMS data to support the increasing number and complexity of federal agency data requests and support the growth of patient-centered outcomes research.

PROJECT PURPOSE & GOALS

The goal of this project is to inform a user-friendly and streamlined data access and acquisition process for federal agencies requesting data from CMS while ensuring compliance with relevant laws and CMS policies.

The purpose of this project is to address the following objectives:

  • Conduct a human-centered design study to understand users’ experiences with the federal agency research request process and identify opportunities for improvements to the current federal data request process.

  • Develop a prototype of the future federal agency request process based on findings from the study.

  • Conduct prototype testing and produce an updated design-driven summary of the processes, technologies, interactions, and experiences that emerged from the user research.