Work

Perceptions of precision health research participation: a cognitive interview study

Year: 2026

Type: preprint

Abstract: Background The Precision rEsearCh pArticipatioN (PECAN) study aims to explore factors that influence perceptions of precision health research participation - defined as research integrating genetic, behavioral, and environmental determinants to tailor individualized disease prevention and treatment - focusing on diverse communities in South Carolina. The objective is to identify factors influencing participation in precision health research and inform strategies to reduce barriers among populations disproportionately affected by health disparities. Methods To ensure the cultural accessibility and comprehensibility of the survey instrument for the PECAN study, researchers conducted a qualitative cognitive interviewing study using a purposive sampling strategy. Four African American community members from the Sea Island Families Project Citizen Advisory Committee participated in a 90-minute cognitive interview conducted using concurrent verbal probing. Participants reviewed a draft PECAN survey designed to assess perceptions of precision health research participation and provided feedback regarding question clarity, comprehension, cultural relevance, and ease of response. Four investigators independently recorded notes, identified recurring themes through consensus review, and used participant feedback to refine survey wording, structure, and content. Results The cognitive interview study identified several survey items that participants found challenging or ambiguous, particularly due to complex wording, culturally irrelevant content, and questions requiring extensive recall. Participants emphasized the need for clearer language, reassurance about anonymity, and the use of biological terms, as well as greater cultural representation. Based on participant feedback, revisions included simplifying language, clarifying terminology, adding contextual statements regarding biospecimen collection, emphasizing anonymity, removing potentially confusing or offensive items, and restricting redundant questions. Conclusions This cognitive interview study offered an empirical pathway for incorporating direct community feedback into the structural and linguistic layout of the PECAN survey. It identified issues related to wording, interpretation, cultural relevance, and respondent comfort informing revisions designed to improve the clarity, comprehensibility, and cultural appropriateness of survey items. While subsequent large-scale psychometric validation is required to establish statistical reliability, this early-phase qualitative process demonstrates the value of community-engaged cognitive interviewing as a formative step in the development of survey instruments intended for diverse populations. Future administration of the revised survey in larger and more diverse samples remains necessary to evaluate its reliability, validity, and broader applicability.

Source: medRxiv

DOI: 10.64898/2026.03.30.26349735