Perspectives on Clinical Research Participation Among Hispanic and NonHispanic Participants in an Online Research Study
Alberto Garcia Villasenor1, Cheryl Chen Meng1, Sue Xuejie Chen1, Ethan G Brown1, Monica Korell1, Caroline Tanner1
1Neurology, University of California San Francisco, Weill Institute for Neurosciences
Objective:

To understand  attitudes and identify barriers to participation in clinical research in Hispanic people with PD (PwPD) and without PD (pwoPD).

Background:

Generalizability of research findings requires participation of all communities. Identifying participation barriers will help develop strategies to improve inclusivity, leading to more equitable health outcomes.

Design/Methods:

Participants in the online Fox Insight study were invited to complete a questionnaire assessing interest and barriers to participating in clinical research. Willingness to participate in research activities and barriers to participation were compared between participants identifying as Hispanic or nonHispanic using  Fisher’s exact test, controlling for PD diagnosis, gender and age.

Results:

Among the 6040 NonHispanic participants, 69.8% were PwPD (51.1% male, mean age 68.56), and 30.2% were PwoPD (22.9% male, mean age 62.78). Among the 245 Hispanic participants, 73.1% were PwPD (48.0 % male, mean age 64.45), and 26.9% were PwoPD (21.2% male, mean age 54.32).

Barriers to participating in research were reported by 70% of participants and were similar for Hispanics and nonHispanics. Hispanics were less likely to choose to participate in research than nonHispanics.  6% of nonHispanics and 9% of Hispanics indicated they would not choose to participate in any research activity. Research activities that fewer Hispanics would participate in included surveys (93.1% nonHispanics vs 87.3% Hispanics would participate), interviews (85.1% nonHispanics vs 76.3% Hispanics), biological samples (85.5% nonHispanics vs 78.4 % Hispanics), imaging studies (72.0% nonHispanic vs 62.4 % Hispanics), and exercise (74.4% nonHispanic vs 67.3% Hispanics).  Hispanic and nonHispanic participants were similarly willing to take medication or have brain surgery.

Conclusions:

Hispanics report more hesitancy to participate in many clinical research activities despite reporting similar barriers to participation as nonHispanics report. Future efforts to understand the reasons for this hesitancy, and to develop ways to increase inclusion of Hispanics in  PD research  are needed.

10.1212/WNL.0000000000211347
Disclaimer: Abstracts were not reviewed by Neurology® and do not reflect the views of Neurology® editors or staff.