Perceptions of precision health research participation: a cognitive interview study

Background: The Precision rEsearCh pArticipatioN (PECAN) study aims to explore factors that influence perceptions of precision health research participation, focusing on diverse communities in South Carolina. The objective is to identify both positive and negative factors affecting participation, enabling the development of strategies to enhance understanding and reduce barriers, particularly within a population facing significant health disparities. Methods: To ensure the effectiveness of the survey instrument for the PECAN study, researchers conducted a cognitive study through guided group discussions with community members. These discussions were designed to pinpoint survey questions that participants found difficult to understand, hard to answer, or unclear. The insights gained from this cognitive evaluation were used to refine and improve the survey, ensuring it is clear, uniform, and effective for gathering meaningful data. 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 this feedback, researchers revised the survey to simplify language, provide contextual disclaimers about specimen collection, depersonalize genetic testing questions, and restructure redundant items. Conclusions: The cognitive interview study was instrumental in enhancing the PECAN survey's clarity and effectiveness. By addressing participants' feedback, the researchers were able to create a more accessible survey instrument. These improvements are expected to facilitate better data collection, ultimately contributing to a deeper understanding of factors influencing precision health research participation among diverse populations. This methodology highlights the importance of participant feedback in developing research tools that are both inclusive and effective.