摘要：Objectives. We used results generated from the first study of the National Institutes of Health Sentinel Network to understand health concerns and perceptions of research among underrepresented groups such as women, the elderly, racial/ethnic groups, and rural populations. Methods. Investigators at 5 Sentinel Network sites and 2 community-focused national organizations developed a common assessment tool used by community health workers to assess research perceptions, health concerns, and conditions. Results. Among 5979 individuals assessed, the top 5 health concerns were hypertension, diabetes, cancer, weight, and heart problems; hypertension was the most common self-reported condition. Levels of interest in research participation ranged from 70.1% among those in the “other” racial/ethnic category to 91.0% among African Americans. Overall, African Americans were more likely than members of other racial/ethnic groups to be interested in studies requiring blood samples (82.6%), genetic samples (76.9%), or medical records (77.2%); staying overnight in a hospital (70.5%); and use of medical equipment (75.4%). Conclusions. Top health concerns were consistent across geographic areas. African Americans reported more willingness to participate in research even if it required blood samples or genetic testing. Although more than 80 000 clinical trials are conducted each year in the United States, less than 1% of the population participates in these studies. 1 Women, the elderly, members of racial/ethnic minority groups, and rural populations are often underrepresented in research, 2,3 leading to findings that do not account for genetic, cultural, linguistic, racial/ethnic, gender, and age differences. A representative population sample in clinical trials is important both from an ethical perspective and to ensure external validity of findings. 3–5 The community health worker (CHW) intervention model could help eliminate this discrepancy. CHWs are lay community members who share a common language and culture with the people they serve. 6 CHWs primarily deliver interventions, navigate patients through cancer treatment, educate patients about their diverse conditions, and facilitate connections to hidden populations. The value of the CHW in research is increasingly recognized; some states now certify CHWs to further professionalize their role. 7,8 In fact, the American Journal of Public Health devoted its December 2011 issue to work associated with CHWs. 7,9 Recognizing this potential, the Clinical and Translational Science Award (CTSA) Strategic Goal 4 Committee (Enhancing the Health of Our Communities and the Nation) of the National Institutes of Health (NIH) established the CTSA Community Engagement Resource Development Workgroup. This group subsequently received an American Reinvestment and Recovery Act supplemental grant in 2009 to collaborate across 5 CTSA sites and 2 community-focused national organizations to develop procedures to increase community participation in research, build the capacity of CHWs to expand their role in research by increasing the rigor of health evaluation metrics in the field, and establish a sustainable network, the Sentinel Network, to provide ongoing, real-time assessments of top health and neighborhood needs, concerns, and research perceptions. The data could then be immediately shared with NIH-CTSA sites, and local communities to increase the representativeness and relevance of research by facilitating community participation. The Sentinel Network is built on an interactive community program called HealthStreet, founded by the lead author (L. B. C.) when she was at Washington University in St. Louis. HealthStreet uses CHWs for 4 aims: to assess the medical problems and health concerns of community residents, to engage in bidirectional sharing of information between the community and research investigators, to link community residents to medical and social services, and to provide community members with opportunities to participate in research. HealthStreet builds trust between the research community and the general public 6,10 by directly engaging individual residents (the program’s first aim) rather than focusing on agencies, providers, and organizations as partners, as is more typical in community engagement research. 6 This strategy ensures that HealthStreet’s efforts do not bypass the input of community members or inadvertently privilege the perceptions of community leaders and service providers. 11–13 Community members often perceive research as primarily meeting the needs of the researcher. 14,15 Recognition of these and other issues has led to an increasingly robust literature on methods to engage the community in research. 10,14,16,17 In line with HealthStreet’s second aim to engage in bidirectional sharing of information between communities and researchers, this literature stresses the need for community members to provide meaningful input into study content. With the discrepancy between participants enrolled in research studies and the populations to whom findings relate, efforts are needed that effectively link people to desired medical and social services (the third aim) and that use this exchange to inform individuals of opportunities for relevant research (the fourth aim). Past studies evaluating barriers to research participation indicate that members of underrepresented groups have concerns with respect to inconvenience of study times, other logistical burdens, and fears about being a guinea pig. 12,18,19 That mistrust, directed at researchers and health professionals, is decreasing as a result of new community engaged research efforts. 20,21 Programs such as the CTSA Sentinel Network and HealthStreet can help change these perceptions. Here we report findings generated from the Sentinel Network’s first study on the assessment of health needs and concerns at 5 diverse CTSA sites. We describe the Sentinel Network study protocol, assessment, and results from the first phase of the collaboration.
