Browsing by Subject "Community advisory board"

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    "I Am Interested!": The Voices of the Community and Their Participation in Health Advisory Boards
    (Mary Ann Liebert, 2024-01-08) Sotto-Santiago, Sylk; Wiehe, Sarah; Claxton, Gina; Stamper, Gavin; Delp, Lindsey; Hudson, Brenda; Lynch, Dustin; Moe, Sharon; Pediatrics, School of Medicine
    Introduction: Researchers can often be challenged by meaningful efforts to involve the public and communities in research. Community and health advisory boards (HABs) offer an opportunity to create a fully intentional and honest relationship between researchers and the community. Objective: Most recently, the All Indiana (IN) for Health HAB had four openings and a call was published to our community of over 13,800 individuals in the All IN for Health newsletter. Four hundred eighty-eight individuals submitted applications to become part of the board. In what follows, we share the lessons in motivations and interests of individuals who responded. Methods: The application process included the following questions: What lived experiences and/or personal interests have motivated you to be involved in All IN for Health? Please explain why you are interested in being an All IN for HAB member. Our analysis approach was qualitative and centered on narrative research. Results: We organize the findings in two categories: Motivation and Interests. Individuals were motivated to participate based on family or friend diagnosis, personal diagnosis, roles as caregivers, desire to impact change and advocacy, role as health professional, and previous participation in research. Interests followed similar themes beginning with crediting their interest to a diagnosis. In addition, we categorized desire to share their experience, personal positionality, and previous research experience, and contributing to the education of student/trainee. Conclusion: By understanding motivations, we understand needs. This information can be used for other advisory boards, as well as recruitment into research participation and health care advocacy.
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    Partnering to Increase Colorectal Cancer Screening: Perspectives of Community Advisory Board Members
    (Sage, 2021-10) Rawl, Susan M.; Bailey, Sandra; Cork, Beatrice; Fields, Matthew; Griffin, Thomas; Haunert, Laura; Kline, Judy; Krier, Connie; Lagunes, Juan; Lambert, Ruth L.; Malloy, Caeli; Quick, Jack; Shedd-Steele, Rivienne; Strom, Sylvia; Carter-Harris, Lisa; School of Nursing
    The Patient-Centered Outcomes Research Institute (PCORI) defines engagement in research as the meaningful involvement of patients, caregivers, clinicians, insurers, and others throughout the entire research process – from planning, to conducting the study, to disseminating study results. The purposes of this paper are to: 1) describe methods used to engage community members across the various phases of a PCORI-funded comparative effectiveness trial to increase colorectal cancer screening; and 2) report results of qualitative and quantitative evaluations of community advisory board members’ experiences on this project. Decisions to join and stay engaged with the study included feeling valued and appreciated, being compensated, the opportunity to contribute to research based on their skills and expertise, and being committed to colon cancer prevention efforts. Challenges identified by advisory board members included the significant time commitment, transportation, and meeting location. Lessons learned and guidance for researchers committed to patient and community engagement are described.
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    Unlocking success: community engagement for enhanced HIV care outcomes
    (Springer Nature, 2024-11-28) Wiehe, Sarah E.; Nelson, Tammie L.; Hawryluk, Bridget; Andres, Unai Miguel; Aalsma, Matthew C.; Rosenman, Marc B.; Butler, Michael S.; Harris, Michelle; Moore, Kem; Scott, C. Dana; Gharbi, Sami; Parks, Lisa; Lynch, Dustin; Silverman, Ross D.; Fortenberry, J. Dennis; Pediatrics, School of Medicine
    Background: Though social determinants are the primary drivers of health, few studies of people living with HIV focus on non-clinical correlates of insecure and/or fragmented connections with the care system. Our team uses linked clinical and multisector non-clinical data to study how residential mobility and connection to social services influence the HIV care continuum. We engage a diverse group of individuals living with HIV and other invested community members to guide and inform this research. Our objective is to generate consultant-informed, research-based interventions that are relevant to the community, and to share our engagement approach and findings so that other researchers can do the same. Methods: Our research team partnered with the Indiana Clinical and Translational Sciences Institute's Research Jam to develop and implement a human-centered design research plan to engage individuals with experience relevant to our research. We recruited a panel of consultants composed of people living with HIV and/or clinicians and individuals from agencies that provide medical and non-medical services to people living with HIV in Marion County, Indiana. To date, we have used a variety of human-centered design tools and activities to engage individuals during six sessions, with results informing our future engagement and research activities. Results: Since the inception of the project, 48 consultants have joined the panel. Thirty-five continue to be actively engaged and have participated in one or more of the six sessions conducted to date. Consultants have helped guide and prioritize analyses, aided in identification of data missing from our ecosystem, helped interpret results, provided feedback on future interventions, and co-presented with us at a local health equity conference. Conclusions: We utilize community engagement to expand the scope of our research and find that the process provides value to both consultants and the research team. Human-centered design enhances this partnership by keeping it person-centered, developing empathy and trust between consultants and researchers, increasing consultant retention, and empowering consultants to collaborate meaningfully with the research team. The use of these methods is essential to conduct relevant, impactful, and sustainable research. We anticipate that these methods will be important for academic and public health researchers wishing to engage with and integrate the ideas of community consultants.