- National Center for Health Statistics at the Centers for Disease Control and Prevention (NCHS-CDC)
- Linking of Clinical and Other Data for Research
- Use of Clinical Data for Research
STATUS: Active Project
CDC’s National Center for Health Statistics (NCHS) project will expand the utility of current and future data linkages for researchers to investigate a range of Patient-Centered Outcomes Research (PCOR) questions and provide timely data about the COVID-19 pandemic. Currently, most of the linked datasets (including those previously funded by the Patient-Centered Outcomes Research Trust Fund (PCOR-TF) are available as restricted-use files that must be accessed through the NCHS and Federal Statistical Research Data Centers (RDC), which creates barriers and reduces the utility of linked data.
To mitigate this barrier, the project team will develop publicly available synthetic linked data products, which protect participant privacy while integrating social determinants, health-related, and administrative data. This project will also produce a public facing dashboard that utilizes the linked data, for a more wide-ranging community of users. Both products will be available on the NCHS website. NCHS will engage with stakeholders to identify and define priority variables to include on the synthetic record-level outcomes (morbidity and mortality for the years prior to and during the COVID-19 pandemic). These stakeholders will also identify key summary statistics to include on a public facing dashboard.
PROJECT PURPOSE & OBJECTIVES
The purpose of this project is to address the following objectives:
- Conduct outreach through stakeholder meetings to gather information that will identify greatest data needs and to prioritize data items for public-use release.
- Establish a synthetic data creation methodology that can be applied to linked data resources.
- Create publicly available synthetic linked data files and a data enclave validation process to confirm analytic results with restricted-use data.
- Create a publicly available analytic dashboard to broaden data accessibility and utility.
- Engage in knowledge dissemination to inform greater research community on how to incorporate best practices and improve accessibility of linked data for evidence building.