Researchers' understanding of recruitment and retention of study subjects is in its infancy. To address the dearth of information on the underrepresentation of diverse populations of women in research studies relating to health issues, the University of California, San Francisco (UCSF) National Center of Excellence in Women's Health completed a comprehensive examination of issues related to recruitment. By synthesizing data from literature reviews, focus groups, surveys, one-on-one interviews, and direct experience recruiting diverse populations of women for research, a conceptual model was developed. This model outlines the interplay of three factors found to be relevant to the recruitment of diverse populations of women into research studies: awareness, acceptance, and access. Practical examples of cost-effective recruitment strategies to be considered for implementation to increase the presence of awareness, acceptability, and access are included in this report.
To rectify the historic lack of research on women's health and the exclusion of women from many significant clinical trials, regulations have been promulgated requiring the inclusion of women and minorities in research studies. Acknowledging that the National Institutes of Health (NIH) mandate has resulted in more inclusive research, the unintended consequences associated with implementation of these regulations must also be explored. While the requirements preclude the use of cost as a reason for excluding women and/or minorities, the additional funding necessary to recruit adequate numbers of study participants has not been provided. Consequently, study recruiters often face unacknowledged expectations and job pressures as they attempt to meet recruitment goals. While it is important to support the NIH mandate, the additional stress imposed upon research study recruiters must also be recognized. Focus groups with study recruiters from various backgrounds and types of research provide an understanding of the challenges recruiters face when attempting to recruit diverse populations of women into research,
Research is ongoing concerning the medical risks and benefits of routine neonatal male circumcision. Interpretation of the data, however, is controversial. Circumcision presents a number of challenges in obtaining informed consent because of a variety of interesting issues. It is a nonemergent, elective procedure that allows for evaluation and discussion over time. In this respect, observation of the informed consent process for circumcision is relevant to other medical decisions, such as advance directives, discussed between primary care providers and patients. Obtaining informed consent for circumcision has its constraints. The process generally occurs over a brief hospital stay. There have been recent changes in the official position regarding the procedure by professional medical societies, and it raises considerable psychologic issues for the provider and may Impact the way in which Information is provided.
Between 1996 and 1999, 18 academic health centers were awarded the designation of National Center of Excellence (CoE) in Women's Health by the Office on Women's Health within the Department of Health and Human Services and were provided with seed monies to develop model clinical services for women. Although the model has evolved in various forms, core characteristics that each nationally designated CoE has adopted include comprehensive, women-friendly, women-focused, women-relevant, integrated, multidisciplinary care. The permanent success of these comprehensive clinical programs resides in the ability to garner support of leaders of the academic health centers who understand both the importance of multidisciplinary programs to the clinical care they provide women and the education they offer to the future providers of women's healthcare.
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