Background:
Race-ethnic disparities exist in stroke incidence, recurrence and mortality. Minority participation in stroke clinical trials is staggeringly low. A significant literature describes patient-reported barriers to recruitment, but researcher barriers are not well documented.
Aim:
To assess stroke researcher best practices and challenges to minority inclusion in stroke trials.
Methods:
The National Initiative for Minority Involvement in Neurological Clinical Trials (NIMICT) uses a mixed methods approach including surveys, focus groups and key informant interviews to expand on understanding of minority recruitment and retention in stroke clinical trials. We designed and tested a 40-item survey based on literature review and used the results to inform semi-structured focus groups and key informant interviews among stroke clinical trial investigators (N=110).
Results:
Key stroke investigators, identified through the Princeton Conference, were invited via email to participate in the survey. Over 70% (n=93) responded: 68% White. Less than half (N=43) reported actively setting recruitment goals for minority inclusion. Only 37% (N=29) required cultural sensitivity training for recruitment staff. Over 80% reported treating adults unable to consent and were concerned about acute stroke time constraints negatively impacting patient/family participation decisions. Key themes from focus groups (N=17) included: 1) Role of government in defining valid minority sub analyses and enforcing existing inclusion guidelines; 2) Challenges unique to acute setting including consent in conditions of prognostic uncertainty; 3) Lack of scientific/research literacy in the lay population; 4) Lack of community engagement including Primary Care Physicians; 5) Lack of cost data to adequately budget for inclusion efforts. Best practices included health literate consent forms, cultural competency, and motivational interview training for coordinators.
Conclusion:
NIMICT’s mixed methods approach contributes new perspectives on unique challenges in stroke clinical research. These findings will inform strategies to improve minority recruitment and retention among neurological clinical trials.
A Review Of Strategies Employed On Minority Recruitment And Retention In Engineering Education
