Collaborative data science requires standardized, harmonized, interoperable, and ethically sourced data. Developing an agreed-upon set of elements requires capturing different perspectives on the importance and feasibility of the data elements through a consensus development approach. This study reports on the systematic scoping review of literature that examined the inclusion of diverse stakeholder groups and sources of social drivers of health variables in consensus-based common data element (CDE) sets. This systematic scoping review included sources from PubMed, Embase, CINAHL, WoS MEDLINE, and PsycINFO databases. Extracted data included the stakeholder groups engaged in the Delphi process, sources of CDE sets, and inclusion of social drivers data across 11 individual and 6 social domains. Of the 384 studies matching the search string, 22 were included in the final review. All studies involved experts with healthcare expertise directly relevant to the developed CDE set, and only six (27%) studies engaged health consumers. Literature reviews and expert input were the most frequent sources of CDE sets. Seven studies (32%) did not report the inclusion of any demographic variables in the CDE sets, and each demographic SDoH domain was included in at least one study with age and sex assigned at birth included in all studies, and social driver domains included only in four studies (18%). The Delphi technique engages diverse expert groups around the development of SDoH data elements. Future studies can benefit by involving health consumers as experts.
Keywords: Delphi technique; PhenX core collection; common data elements; social drivers of health; stakeholder engagement.
Collecting and capturing social factors that affect individuals’ health is imperative. Social drivers of health data allow researchers to understand health disparities to make healthcare available, accessible, and affordable. However, collecting common health data elements has challenged researchers due to limited resources to facilitate change. Incorporating various stakeholders, such as individuals and patient advocacy groups, can effectively contribute to the research process as community advisors. This article reviews the studies that used the Delphi method and brings together experts to agree on guidelines for collecting common data elements. The article’s findings reveal that experts are healthcare professionals and researchers, leaving out the crucial input from patients and caregivers. This article emphasized that developing a standard set of data elements can improve the standardization of social drivers of health. Common data elements provide the opportunity to improve patients’ and social circumstances and their efforts toward health outcomes.
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