Adolescent Participation in HPV Vaccine Clinical Trials: Are Parents Willing?

Approximately one-quarter of human papillomavirus (HPV) infections are acquired by adolescents, with a higher burden among racial/ethnic minorities. However, racial/ethnic minorities have been underrepresented in previous HPV vaccine trials. Ongoing and future HPV vaccine optimization trials would benefit from racially- and ethnically-diverse sample of adolescent trial participants. This study examined factors influencing parental willingness to consent to their adolescents' participation in HPV vaccine clinical trials and tested for possible racial differences. A convenience sample of parents of adolescents (N = 256) completed a cross-sectional survey. Chi square analyses were used to assess racial differences in parental HPV vaccine awareness and intentions and willingness to consent to their child participating in an HPV vaccine clinical trial. Ordinal logistic regression was used to identify factors associated with willingness. Approximately 47% of parents were willing to allow their adolescent to participate in HPV vaccine clinical trials (30.7% African American and 48.3% Caucasian, p = .081). African Americans had lower HPV vaccine awareness (p = .006) but not lower intentions to vaccinate (p = .086). Parental willingness was positively associated with the following variables: Child's age (p < .039), Perceived Advantages of HPV Vaccination for Adolescents (p = .002), Parental Trust in Medical Researchers (p < .001), and Level of Ease in Understanding Clinical Trial Information (p = .010). Educating parents about the advantages of HPV vaccines for younger adolescents using low-literacy educational materials and building trust between parents and researchers may increase parental willingness to consent to adolescent participation in HPV vaccine clinical trials.

Needs, Priorities, and Recommendations for Engaging Underrepresented Populations in Clinical Research: A Community Perspective.

Engaging underrepresented groups in outcomes research is a public health priority for reducing health and health care disparities; yet, engaging these groups is challenging. Failure to involve these underrepresented populations in research further exacerbates these disparities. This article presents the health and research priorities of diverse groups of underrepresented populations in biomedical research, their concerns for participating in research, and strategies to engage them in their healthcare and research studies. Eleven community listening sessions, ranging from 7 to 13 community members each (N = 117), representing racial/ethnic minority, economically disadvantaged (e.g., uninsured), and hearing impaired communities. We used an inductive, qualitative content analysis approach to analyze the data for emerging themes. We identified the following themes: Uncertainties of underrepresented populations regarding research participation; Ineffective communication about research opportunities and research findings; Research on primary care and prevention are priorities for underrepresented populations in research; and Research teams need training in cultural competence and humility. Underrepresented groups provided research priorities, concerns, and strategies to engage them in their healthcare and in research studies. Findings from this study could facilitate improvement of research participation among underrepresented groups, ultimately reducing health disparities and improving quality of life among groups commonly omitted from research recruitment and participation.

Development of strategies for community engaged research dissemination by basic scientists: a case study.

As depicted in the translational research continuum, dissemination of research findings to past research participants and the community-at-large is integral to improving health outcomes. Blocks in translation exist in which poor dissemination is a major contributor. Limited progress has been made on how to engage basic scientists at T1 and T2 phases to meaningfully disseminate study findings to community. Our objective is to report on 4 cases of community engaged research dissemination activities among 3 basic scientists (ie, a cancer biologist, a biochemist, and a molecular biologist.): a townhall, a radio listening session, a community newsletter, and a Facebook Live segment. The Meharry Community Engagement Core dissemination team designed these activities using community informed processes. To plan and conduct these activities, a basic scientist is partnered with a community engaged researcher and a community-based organization to create a dissemination product which can be understood and potentially used by past research participants and the community-at-large. We share reflections from basic scientists, community organizations, and event participants. Finally, we provide competencies, informed by basic scientists, needed to engage in effective, community-engaged research dissemination. The activities, reflections, and competencies can be used by basic scientists and academic institutions as models to guide their community engaged research dissemination activities. This work supports the goal to bridge the translational research gap.

Developing an Infrastructure to Cultivate Equitable and Sustainable Community-Academic Research Partnerships: Meharry Community Engagement Core.

OBJECTIVES: Achieving health equity and reducing racial and ethnic health disparities require intentional community engagement efforts by academicians. Primary among these efforts is the acknowledgement of research-related mistrust. Efforts to build trust must begin with recognition of the invaluable knowledge and experience community stakeholders possess. METHODS: The Meharry Community Engagement Core builds on the foundation provided by Meharry Medical College, a Historically Black College and University, to achieve its mission to improve health and health outcomes through long-term collaborative research partnerships with community stakeholders. Early in its development, the Core actively engaged community stakeholders throughout all research phases. RESULTS: Early successes include achieving community feedback on research priorities, policies, and procedures and developing partnerships that span the research spectrum. Core work to date is promising and may serve as a model for addressing research-related mistrust and efforts to build trust.