STATUS: Active Project
Researchers seeking to conduct patient-centered outcomes research (PCOR) and clinical effectiveness research (CER) have used a variety of data sources to further their work. Depending on the question being examined, data resources have included primary data collection from randomized controlled trials, independent surveys, electronic health records, claims data from private vendors, federal surveys, and administrative data.
While each data source has its own strengths and weaknesses to conduct PCOR, some notable data challenges that researchers face include the following:
- Detailed diagnosis and procedure information is often unavailable.
- Social Determinants of Health (SDOH) information is often missing or incomplete, limiting the ability to address emerging issues such as equity.
- Information about medical practitioners, healthcare organizations, and other “supply-side” actors is fragmentary and limits our understanding of how care is accessed and delivered in the U.S.
- Data sources often cannot be linked geographically, limiting the ability to understand how patients’ local communities and environment may affect healthcare.
- Data sources are often “convenience samples,” lacking representativeness of the community or state levels and having limited sample sizes and settings of care.
- Gaining access to comprehensive data is generally difficult, costly, and time consuming.
Currently, no ideal database exists that addresses challenges around these challenges and researchers must decide which aspects of their research to focus. This initiative aims to address many of these challenges by blending the most salient features into self-contained databases, providing a panoramic view of patient care and enhancing resources to conduct PCOR and CER.
The databases will be made available to the public, particularly the research community, to conduct patient-centered outcomes research. The databases will be unique and will allow researchers to explore new PCOR topics that were not possible before or to revisit existing ones with richer, more complete data.
PROJECT PURPOSE & GOALS
This pilot initiative will support the creation of a prototype data infrastructure that will showcase a panoramic view of patient care within four selected states. The final databases will include information about the medical care patients receive in inpatient and ambulatory care settings, beneficiary enrollment information, characteristics of the providers they visit, and a variety of non-clinical factors such as social determinants of health, which have shown to have substantial impact on health outcomes to gain a panoramic view of who receives medical care and how it is delivered.
- Produce four state Panoramic View of Patient Care Databases with full technical documentation and codebooks
- A report describing protocols and processes for release of databases
- Research manuscripts suitable for publication in a peer-reviewed journal