Attitudes toward patient engagement in clinical pain research: Insights from individuals with chronic pain in the United States

Abstract

The value of engaging people with lived experience into chronic pain research is becoming increasingly recognized, yet the perspectives of individuals with chronic pain who have not previously participated in research are underexplored. This study aims to fill this gap by assessing the attitudes, preferences, and barriers related to patient engagement among adults living with chronic pain in the United States (US). An online survey was developed in collaboration with an advisory board and community engagement studio and distributed through Qualtrics panels from December 2023-January 2024. Quotas for age, gender, and race were employed to reach a representative sample for each of these variables based on the 2020 US census.^1,2 Of the 505 participants, 267 reported chronic low back pain (53%) and 144 had headaches or migraines (22%). A majority (65%−79%) were familiar with medical research, and 64% (n = 327) expressed interest in engaging as patient partners. Key facilitators for engagement included the desire to help others and learn about their condition, while compensation was also an important motivator. Barriers were time constraints, lack of payment, and worry about privacy. Younger participants (Chi-square p = 0.04) and those with higher education (Chi-square p = 0.01) were more likely to express interest in research partnerships. Strategies to enhance patient engagement should focus on reducing barriers and providing clear, meaningful opportunities for engagement, potentially increasing both recruitment and retention in chronic pain research. Future research should explore these dynamics further and consider international perspectives to develop comprehensive patient engagement strategies.

Perspective

This study surveys over 500 individuals with chronic pain to understand their attitudes towards engagement in clinical pain research. It identifies key facilitators and barriers, such as time constraints and low compensation, and aims to refine strategies to enhance patient partner engagement and representation in clinical pain research.