Patient-Centered Outcomes Research

The team conducted an environmental scan to explore the patient-reported outcome measures (PROMs) that could be used in new and emerging human immunodeficiency virus (HIV) therapies. In the context of HIV clinical trials, PROMs may be used as clinical outcome assessments (COAs) to characterize how patients feel and function and to inform regulatory evaluations.

The team conducted an environmental scan to explore the patient-reported outcome measures (PROMs) that could be used in new and emerging sickle cell disease (SCD) therapies.

Artificial intelligence (AI) tools, particularly those that use natural language processing (NLP), are becoming increasingly prominent in healthcare delivery. For these systems to operate safely and reliably in clinical settings, they require high-quality training datasets drawn from multiple sources, including electronic health record (EHR) data, that closely reflect real-world conditions.

The United States (U.S.) faces urgent health challenges, including poor maternal and childhood health outcomes, childhood obesity, opioid use disorder, cancer, and chronic conditions, which require personalized care tailored to each patient’s unique circumstances.

This 2024 vignette provides examples of how a range of OS-PCORTF cross-agency projects are working to improve maternal health by 1)Reducing Preventable Pregnancy-Related Deaths and Improving Maternity Care 2) Studying Substance Use Treatment Outcomes for Pregnant Women 3) Representing all American Mothers and Children in Research Data

This report is to serve as a data source guide that helps policymakers and researchers understand the current data infrastructure landscape for SCD-focused health outcomes research. Specifically, the goals are to identify existing SCD data sources and data dashboards as well as key considerations to enhance data collection and use.

Improving maternal health in the U.S. requires strengthening care and support during pregnancy, childbirth, and the postpartum period. Doula services have shown promise in improving maternal and infant outcomes, yet more research is needed to understand these impacts.

The U.S. behavioral health (BH) workforce faces significant shortages and distribution disparities, hindering access to quality care and worsening health outcomes. A comprehensive, centralized database of BH providers is vital for advancing patient-centered outcomes research (PCOR), comparative effectiveness research (CER), and evidence-based policymaking.

Increasing availability of linked child welfare and Medicaid data can advance research on the intersections of child welfare and Medicaid. The project, Child and Caregiver Outcomes Using Linked Data (CCOULD), developed a research-use dataset combining child welfare records and Medicaid claims for children and families involved in child welfare systems in Florida and Kentucky.

This report is the third in a series of reports commissioned by the Office of the Assistant Secretary for Planning and Evaluation (ASPE) from the RAND Corporation addressing state all payer claims databases (APCDs). APCDs include medical, pharmacy, and dental claims, as well as enrollment and provider files collected from private and public payers by states, usually as part of a State mandate.