Perceptions of precision health research participation: a cognitive interview study

Area of Science:

• Health disparities research
• Precision medicine engagement
• Community-based participatory research

Background:

• The Precision rEsearCh pArticipatioN (PECAN) study investigates factors influencing participation in precision health research.
• Focuses on diverse communities in South Carolina, addressing significant health disparities.
• Aims to identify barriers and facilitators to enhance understanding and engagement.

Purpose of the Study:

• To refine the PECAN study survey instrument for improved clarity and effectiveness.
• To ensure the survey accurately captures perceptions of precision health research participation.
• To develop strategies for increasing participation in precision health research.

Main Methods:

• Conducted a cognitive study using guided group discussions with community members.
• Identified survey questions that were difficult to understand, answer, or unclear.
• Utilized participant feedback to revise and improve the survey instrument.

Main Results:

• Identified challenging survey items due to complex wording, cultural irrelevance, and recall demands.
• Participants requested clearer language, anonymity assurances, and greater cultural representation.
• Revised survey features simplified language, disclaimers, depersonalized genetic questions, and restructured items.

Conclusions:

• Cognitive interviews significantly enhanced the PECAN survey's clarity and effectiveness.
• Participant feedback led to a more accessible and inclusive survey instrument.
• Improved survey facilitates better data collection for understanding precision health research participation.