Community-Academic Initiative to Measure and Improve Underrepresented Group Participation in Parkinson's Disease Research
Anabel Marre1, Emily Zivin2, Karen Williams2, Maxwell Shramuk3, Nicola Lancki3, Jennifer Adrissi4, Danielle Larson2
1Northwestern University, 2Department of Neurology, 3Department of Preventive Medicine-Biostatistics, Northwestern University Feinberg School of Medicine, 4Department of Neurology and Department of Medicine, University of California Los Angeles
Objective:
To better understand the reason for lack of racial and ethnic diversity in Parkinson’s Disease (PD) clinical trials by measuring community members’ baseline knowledge of PD, trust of researchers, and willingness to participate in research.
Background:
PD clinical trial participants are disproportionately non-Hispanic Caucasian, creating limited generalizability of research findings. It is unclear why there is incommensurate rates of underrepresented group (URG) research participation; lower health literacy and lack of trust have been suggested as contributors. Community engagement through education on PD and associated studies has the potential to improve awareness and understanding of research, and in turn increase participation rates.
Design/Methods:
Four educational workshops with a total of 92 participants were held at community centers in URG-predominant Chicago neighborhoods. Pre- and post-workshop surveys qualitatively assessed participants’ knowledge of PD symptoms and signs, trust in medical researchers, and willingness to participate in clinical trials.
Results:
The majority of participants identified as either African American (35.9%) or Asian (37%). Survey results indicated that on the whole, community members were trustful of clinical researchers and had positive feelings towards research and researchers' intentions. Participants were most open to participate in studies that could be done within their homes or offered financial compensation, and were least open to participate in studies that involved obtaining biological samples. Very few respondents had ever been asked to participate in a PD clinical trial before (8.1%). Respondents had a basic baseline understanding of PD, and tremor was the symptom most commonly identified as an early sign of PD (32.6%).
Conclusions:
Surveying predominantly AA and Asian community members of URG-rich Chicago communities revealed moderate to high levels of trust of researchers in these groups, and a willingness to participate in patient-centered clinical trials that mitigate barriers and include facilitators.