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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
OS-PCORTF Strategic Plan Alignment
  • Primary: Goal 2. Data Standards and Linkages for Longitudinal Research

 

STATUS: Completed 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, the number of federal agencies submitting complex data requests to CMS increased, demonstrating a need to update the standard data request process. Under this project, CMS evaluated the current process and used the findings to inform design of a more streamlined and user-friendly process that meets federal agency partners’ needs. This project leveraged 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. 

PURPOSE 
This project aimed to inform user-friendly and streamlined data access and acquisition process for federal agencies requesting data from CMS while ensuring compliance with relevant laws and policies by:

  • Conducting 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. 
  • Developing a prototype of the future federal agency request process based on findings from the study. 
  • Conducting prototype testing and produce an updated design-driven summary of the processes, technologies, interactions, and experiences that emerged from the user research.

KEY IMPACTS 
Improving access and use of data: Prototype resources for CMS data request process 
This project aimed to streamline federal agency access to CMS data and make the process more efficient by addressing root causes of access challenges. Following a human-centered design study to understand the experiences and limitations of accessing CMS data, four prototype resources were developed to facilitate a more streamlined, transparent, and user-friendly data request process that meets federal agency partners’ needs while ensuring compliance with relevant laws and policies.

PUBLICATIONS 
Project Final Report. This report summarized the process and findings of the human centered design study to better understand the experience federal agencies have requesting CMS data and to understand the limitations, as well as findings from prototype testing of the future federal agency request process.