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. 2025 Apr 30;9(3):pkaf040.
doi: 10.1093/jncics/pkaf040.

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

Kriyana P Reddy  1 , Saania Mirpuri  1 , Cara L Berkowitz  1 , Elizabeth M de Jesus  1 , Sarah B Hulse  1 , Julia T Lewandowski  1 , Kerry Q Coughlin  2 , Merium L Burwell  3 , Robin Evans  3 , Jennifer Galetta  3 , Sharon Rivera Sanchez  3 , Trudy L Buckingham  4 , Victoria Livingstone  4 , Anne Marie McCarthy  5 , Peter E Gabriel  2   3   6 , Christine E Edmonds  3   7 , Tamara J Cadet  2   3   8   9 , Oluwadamilola M Fayanju  1   2   3   9
Affiliations

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

Kriyana P Reddy et al. JNCI Cancer Spectr. .

Abstract

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.

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Conflict of interest statement

Co-authors T.L.B. and V.L., who are employees of Gilead Sciences, Inc, a sponsor of the study, were involved in the design of the study, the writing of the manuscript, and the decision to submit the manuscript for publication; no new data were reported, but neither of them is involved in the collection, analysis, or interpretation of the data being generated in the ongoing trial described in this commentary. No other authors have conflicts to declare.

Figures

Figure 1.
Figure 1.
Clinical trial flow diagram. AHC-HRSN = Accountable Health Communities Health-Related Social Needs Screening Tool; Health Leads = Health Leads Social Screening Tool; HUP = Hospital of the University of Pennsylvania; MPM = MyPennMedicine (ie, MyChart patient portal messaging); NCCN = National Comprehensive Cancer Network; NPV = New Patient Visit; PAH = Pennsylvania Hospital; PPMC = Penn Presbyterian Medical Center.
Figure 2.
Figure 2.
Timeline of trial development and implementation.
See this image and copyright information in PMC

References

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