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Implementing social and behavioral determinants of health data collection: Insights from a pragmatic trial

Reddy KP, Mirpuri S, Berkowitz CL, de Jesus EM, Hulse SB, Lewandowski JT, Coughlin KQ, Burwell ML, Evans R, Galetta J, Rivera Sanchez S, Buckingham TL, Livingstone V, McCarthy AM, Gabriel PE, Edmonds CE, Cadet TJ, Fayanju OM
JNCI Cancer Spectr

In response to growing evidence and recognition that social and behavioral determinants of health (SBDOH) differentially affect the health-care experiences and outcomes of patients with cancer, there has been an increased focus on optimizing the routine collection of such data. In spring 2024, we launched a pragmatic clinical trial titled "Effect of Early Point-of-Service Social and Behavioral Determinants of Health (SBDOH) Screening and Enhanced Navigation on Care Delivery for Patients With Breast Cancer" (ClinicalTrials.gov identifier NCT06019988) at our academic health system. Instruments and modalities were selected following a process of collaborative and iterative consensus building that included an in-person discovery workshop with patients, national experts in psychometrics and SBDOH collection, health system leadership, faculty and staff stakeholders, and study sponsors. The final protocol, which used the Consolidated Framework for Implementation Research, follows a stepped-wedge cluster-randomized format and compares 3 SBDOH screening instruments-Accountable Health Communities Health-Related Social Needs Screening Tool, Health Leads Social Screening Tool, and the National Comprehensive Care Network Distress Thermometer and Problem List-and 3 delivery modalities-the Epic electronic health record patient portal; bidirectional text-based conversational agent ("chatbot"), and interactive voice response administered by phone. Despite substantial resources, multidisciplinary collaboration, and advanced planning, we encountered challenges related to patient navigation, stakeholder engagement, and technological integration. We describe our experience as a guide for others aspiring to realize real-world implementation of routine SBDOH data collection.

Reddy KP, Mirpuri S, Berkowitz CL, et al. Implementing social and behavioral determinants of health data collection: insights from a pragmatic trial. JNCI Cancer Spectr. 2025;9(3). DOI:10.1093/jncics/pkaf040. PMID: 40408149

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Publication year
Resource type
Peer Reviewed Research
Outcomes
Process
Screening research
Yes
Social Determinant of Health
Not Specified
Study design
Other Study Design