Research Advocacy Training Program Benefits Diverse Older Adults in Participation, Self-Efficacy, and Attitudes toward Research

Abstract

Research Advocacy Training Program Benefits Diverse Older Adults in Participation, Self-Efficacy, and Attitudes toward Research Rebecca L. Dillard, MA, Molly Perkins, PhD, MA, Ariel Hart, Chaohua Li, Ron Wincek, David Jones, and Madeleine E. Hackney, PhD What Is the Purpose of this Study? The Developing a Research participation Enhancement and Advocacy Training prograM for diverse Seniors (DREAMS) program aims to engage diverse older adults in community-based participatory research (CBPR) as educated research participants and advocates across research disciplines. In this study we sought to: • Educate stakeholders about the value of research and the importance of their participation and provide them with opportunities to participate in Patient Centered Outcomes Research (PCOR) via a two-part health education (part I) and research advocacy training program (part II). • Examine the effects of DREAMS on health literacy, psychosocial function (depression, participation, and quality-of-life domains), beliefs and attitudes toward research, and self-efficacy in diverse groups of older adults. • Compare effect of DREAMS participation of individuals who completed only part I of DREAMS versus individuals who completed both parts I and II. We hypothesized that both groups would benefit from DREAMS, but that greater benefits would be apparent among DREAMS part II completers compared with those who completed only part I. What Is the Problem? • Older adults, particularly those in disadvantaged and underserved minority groups, have historically been underrepresented in research despite their being disproportionately affected by health disparities, negative social determinants of health, higher rates of adverse health outcomes, and chronic illness and multimorbidity. • Historical mistreatment in biomedical research contexts, lingering distrust of the research community, and, importantly, a lack of understanding/knowledge about the research process, among other factors, perpetuate the dearth of minority and low socioeconomic status older adults in scientific research. • Engagement of the scientific community with diverse groups of older adults is necessary to overcome challenges with research recruitment and also to appropriately address health disparities in research and clinical settings. The preparation of a diverse cohort of older adults to be active in PCOR is vital to enabling clinical investigators to create projects that will improve health care delivery and health outcomes for older populations. What Are the Findings? • Educating seniors about health and the research process in a senior-friendly, highly participatory manner can increase research participation and improve health literacy and psychosocial health among underserved seniors. • Targeted training in health education (e.g., to specifically address misconceptions and fears) plus exposure to research advocacy resulted in improved attitudes and knowledge regarding research. [End Page 363] • Our study findings suggest that advocacy training in particular may impact older adults’ willingness to engage with the scientific community and could lead to improvements in participants’ overall quality of life. Who Should Care Most? • Researchers and academic institutions. • Older adults, particularly those in disadvantaged and/or minority groups. • Clinicians and those working on translation of scientific research to clinical practice. Recommendations for Action • Increased PCOR/CBPR participation by informed older adults across multiple racial/ethnic and socioeconomic status will allow researchers to better characterize the health care challenges diverse older adults face, leading to better health outcomes and decreased burden and cost to health care systems. • Broad dissemination of health education and research advocacy training grounded in CBPR principles to bolster recruitment efforts of this largely overlooked population into research. • A pared down approach for general health knowledge delivered in shorter time stints and/or in clinic settings may be appropriate for patient/potential participants and clinicians and researchers. [End Page 364] Rebecca L. Dillard Urban Health Initiative, Emory University School of Medicine Emory Center for Health in Aging, Emory University Molly Perkins Emory Center for Health in Aging, Emory University Division of General Internal Medicine and Geriatrics, Emory University School of Medicine Center for Visual and Neurocognitive Research, Atlanta VA Medical Center Ariel Hart Emory Center for Health in Aging, Emory University Division of General Internal Medicine and Geriatrics, Emory University School of Medicine Chaohua Li Rollins School of Public Health, Emory University Ron Wincek Community Member/Patient Stakeholder Advisor Community Affiliate, Emory Center for Health in Aging David Jones Community Member/Patient Stakeholder Advisor Community Affiliate, Emory Center for...