Using Participatory Methods to Create Informational Videos for Inclusive Brain Stimulation Research Recruitment: Action Research Study and Pilot Randomized Controlled Trial

Abstract

Background: Black and Hispanic/Latino communities experience disproportionate chronic pain and are underrepresented in pain research. Transcutaneous auricular vagus nerve stimulation (taVNS) and transcranial magnetic stimulation (TMS) are promising tools for pain management. Therefore, it is critical to ensure that research using these tools engages all communities to make research findings more generalizable and reach all who may benefit. Lack of diversity in the research workforce itself is a key barrier to improving Black and Hispanic/Latino representation in pain research, and video-enhanced recruitment and consenting may be useful tools to better engage Black and Hispanic/Latino communities. Objective: The primary goal of this project was to use participatory methods to develop informational videos for inclusive brain stimulation research recruitment. Methods: Using community participatory research principles in an iterative process, key stakeholders were engaged in 2 consecutive studies to create and then test informational videos on taVNS and TMS. The key stakeholders included neuromodulation researchers as well as Black English-speaking, Hispanic/Latino Spanish-speaking, and Haitian Creole-speaking people with chronic pain. The first study involved iterative feedback from stakeholders through focus groups and interviews to develop test videos, which were then refined based on community member input. The second study was a pilot randomized controlled trial used to assess the impact of these videos on participant expectations for pain relief with taVNS. Results: Twenty-five community members with chronic pain provided input into the development of the videos, which received overwhelmingly positive feedback. Twenty-eight people with chronic neuropathy were enrolled in the randomized controlled trial, with 24 completing the study. There was no significant difference in expectancy scores between participants who viewed the videos and those who received traditional brochures (median values of 8.2 for both groups; 95% CIs for the means of 7.2‐8.7 and 6.4‐8.7, P=.8). Conclusions: These findings suggest that while the videos may improve engagement, they do not unduly influence expectations, potentially making them valuable tools for improving research participation in noninvasive brain stimulation research. These videos will be freely available to help researchers engage people from diverse communities.