A manuscript published in December 2020 in Contemporary Clinical Trials Communications highlights work by Project Data Sphere and RTI International (RTI) to improve access to clinical trial data supporting research on health care disparities.

“Enhancing the Analytic Utility of Clinical Trial Data to Inform Health Disparities Research” describes how Steven B. Cohen and his team at RTI are augmenting selected PDS patient-level cancer phase III clinical datasets by linking the social, economic, and health-related characteristics of like cancer survivors from nationally representative health and health care-related survey data from the Medical Expenditure Panel Survey (MEPS).

MEPS, sponsored by the Agency for Healthcare Research and Quality (AHRQ), is the nation’s primary source of nationally representative, comprehensive, person-level data on health care use, insurance coverage, and expenses.

“Clinical trials, for example, are used to identify safe and effective treatments for all those with cancer but are often conducted among younger, healthier, and less racially diverse patients than the population at large,” the article notes. “As a result, there is an increasing interest in diversifying clinical trial patients to ensure that resultant treatments are suited for those who are disproportionately affected in the first place.”

Data providers are required to de-identify patient-level data before submitting it to PDS. That means removing social and demographic content that could otherwise be used to study underserved populations and factors that contribute to health inequities.

With support from the Robert Wood Johnson Foundation, PDS and RTI International are working to address that gap. The enhanced data will help researchers explore the influence of healthcare access, socioeconomic factors, and health behaviors on the patient-level representativeness and outcomes data.

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