Nimict: Addressing poor recruitment and retention of minority and underserved populations in neurological clinical research
Monday, November 4, 2013
: 3:30 p.m. - 3:45 p.m.
Poor recruitment and retention of minority populations in neurological clinical research continues to be a significant barrier in the reduction of health disparities. The National Initiative for Minority Involvement in Clinical Trials (NIMICT) study is examining barriers and best practices to recruitment and retention of underserved populations in neurological clinical trials using qualitative and quantitative methods including key informant interviews, focus groups, and surveys. As a deliverable NIMICT will develop, and test a series of recruitment toolkits tailored to lay communities, researchers, and institutions (government and academic). Our first 40-item survey was developed to capture investigators' experiences in minority recruitment and retention. We report on 93 stroke clinical trial investigators who completed the survey. Only 49% of investigators reported actively setting recruitment goals for the inclusion of minority populations; and only 37% reported cultural sensitivity training was required for recruitment staff. Half of the researchers (51%) reported consultation with community members as part of research design and study planning. We also asked about unique challenges of neurological trials. Over 80% of investigators reported frequently treating adults unable to consent and expressed concern about patients' and family decision-making processes on trial participation in an acute time setting. Finally, in a series of open-ended questions, the majority of researchers expressed difficulty explaining neurological concepts, such as uncertainty of prognosis, to patients and families. The NIMICT survey contributes a new dimension to the rich literature as it highlights novel investigator barriers and challenges to enhancing participation of minority populations into neurological clinical trials.
Diversity and culture
Public health or related organizational policy, standards, or other guidelines
Describe NIMICT methods and toolkit.
Identify the unique challenges for neurological investigators in the recruitment and retention of minority participants.
Keyword(s): Clinical Trials, Minority Research
Presenting author's disclosure statement:
Qualified on the content I am responsible for because: Dr. Boden-Albala recognized as a leading social epidemiologist utilizing stroke and cardiovascular disease models to link culture, race, ethnicity, and multi-level behavior to disease outcomes. She uses epidemiologic tools to document the social, demographic, and behavioral risk factors for disease; to assess preparedness to act in risk factor reduction and acute illness.She is an associate professor and chief of the division of social epidemiology in the Department of Health Policy and Evidence.
Any relevant financial relationships? No
I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines,
and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed
in my presentation.