Perceptions of clinical research participation among African American women. 2007

Yolanda R Smith, and Angela M Johnson, and Lisa A Newman, and Ardeth Greene, and Timothy R B Johnson, and Juliet L Rogers
Department of Obstetrics and Gynecology, University of Michigan, Ann Arbor, Michigan 49109, USA. ysmith@umich.edu

BACKGROUND Recruiting minority women into clinical research remains a significant challenge to conducting ethnically representative research. The main objective of this Office on Women's Health, DHHS-funded e-health database evaluation project was to examine African American women 's thoughts and perceptions about the clinical research process and about participation in the University of Michigan Women's Health Registry research database. METHODS Thirty-one African American women were recruited from the community to participate in a total of five 90-minute focus group discussions. All sessions were audiotaped and transcribed verbatim. Thematic content analysis was used to identify relevant themes about participation in clinical research and the Women's Health Registry. RESULTS Ten common trends were identified. (1) Information about the Women's Health Registry is not reaching the community. (2) Research is perceived as biased to benefit Caucasians. (3) Community involvement by the research team is critical for trust to develop. (4) Research directly relevant to African Americans or their community will encourage participation. (5) Researchers should use existing networks and advertise in appropriate locations. (6) The community needs more information concerning research. (7) Compensation is important. (8) Research that addresses a personal or family medical problem encourages involvement. (9) Minority representation on the research team is a motivator to participation. (10) There is limited time for healthcare-related activities. CONCLUSIONS Successful recruitment strategies for African American women should feature community-based, culturally appropriate approaches. Online research databases for subject recruitment will likely be successful only if implemented within a broader community-oriented program.

UI MeSH Term Description Entries
D007722 Health Knowledge, Attitudes, Practice Knowledge, attitudes, and associated behaviors which pertain to health-related topics such as PATHOLOGIC PROCESSES or diseases, their prevention, and treatment. This term refers to non-health workers and health workers (HEALTH PERSONNEL). Knowledge, Attitudes, Practice
D008824 Michigan State bounded on the north by the Great Lakes, on the east by Canada, on the south by Wisconsin, Indiana, and Ohio, and on the west by Lake Michigan and Wisconsin.
D008875 Middle Aged An adult aged 45 - 64 years. Middle Age
D010342 Patient Acceptance of Health Care Patients' willingness to receive health care. Acceptability of Health Care,Health Care Seeking Behavior,Acceptability of Healthcare,Acceptors of Health Care,Health Care Utilization,Nonacceptors of Health Care,Patient Acceptance of Healthcare,Care Acceptor, Health,Care Acceptors, Health,Care Nonacceptor, Health,Care Nonacceptors, Health,Health Care Acceptability,Health Care Acceptor,Health Care Acceptors,Health Care Nonacceptor,Health Care Nonacceptors,Healthcare Acceptabilities,Healthcare Acceptability,Healthcare Patient Acceptance,Healthcare Patient Acceptances,Utilization, Health Care
D011795 Surveys and Questionnaires Collections of data obtained from voluntary subjects. The information usually takes the form of answers to questions, or suggestions. Community Survey,Nonrespondent,Questionnaire,Questionnaires,Respondent,Survey,Survey Method,Survey Methods,Surveys,Baseline Survey,Community Surveys,Methodology, Survey,Nonrespondents,Questionnaire Design,Randomized Response Technique,Repeated Rounds of Survey,Respondents,Survey Methodology,Baseline Surveys,Design, Questionnaire,Designs, Questionnaire,Methods, Survey,Questionnaire Designs,Questionnaires and Surveys,Randomized Response Techniques,Response Technique, Randomized,Response Techniques, Randomized,Survey, Baseline,Survey, Community,Surveys, Baseline,Surveys, Community,Techniques, Randomized Response
D012107 Research Design A plan for collecting and utilizing data so that desired information can be obtained with sufficient precision or so that an hypothesis can be tested properly. Experimental Design,Data Adjustment,Data Reporting,Design, Experimental,Designs, Experimental,Error Sources,Experimental Designs,Matched Groups,Methodology, Research,Problem Formulation,Research Methodology,Research Proposal,Research Strategy,Research Technics,Research Techniques,Scoring Methods,Adjustment, Data,Adjustments, Data,Data Adjustments,Design, Research,Designs, Research,Error Source,Formulation, Problem,Formulations, Problem,Group, Matched,Groups, Matched,Matched Group,Method, Scoring,Methods, Scoring,Problem Formulations,Proposal, Research,Proposals, Research,Reporting, Data,Research Designs,Research Proposals,Research Strategies,Research Technic,Research Technique,Scoring Method,Source, Error,Sources, Error,Strategies, Research,Strategy, Research,Technic, Research,Technics, Research,Technique, Research,Techniques, Research
D001741 Black or African American A person having origins in any of the black racial groups of Africa (https://www.federalregister.gov/documents/1997/10/30/97-28653/revisions-to-the-standards-for-the classification-of-federal-data-on-race-and-ethnicity). In the United States it is used for classification of federal government data on race and ethnicity. Race and ethnicity terms are self-identified social construct and may include terms outdated and offensive in MeSH to assist users who are interested in retrieving comprehensive search results for studies such as in longitudinal studies. African American,African Americans,African-American,Afro-American,Afro-Americans,Black Americans,Blacks,Negroes,African-Americans,Negro,Afro American,Afro Americans,American, African,American, Black,Black American
D002986 Clinical Trials as Topic Works about pre-planned studies of the safety, efficacy, or optimum dosage schedule (if appropriate) of one or more diagnostic, therapeutic, or prophylactic drugs, devices, or techniques selected according to predetermined criteria of eligibility and observed for predefined evidence of favorable and unfavorable effects. This concept includes clinical trials conducted both in the U.S. and in other countries. Clinical Trial as Topic
D003466 Cultural Characteristics Those aspects or characteristics which identify a culture. Ethnic Boundary Maintenance,Boundary Maintenance, Ethnic,Boundary Maintenances, Ethnic,Characteristic, Cultural,Characteristics, Cultural,Cultural Characteristic,Ethnic Boundary Maintenances,Maintenance, Ethnic Boundary,Maintenances, Ethnic Boundary
D005260 Female Females

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