Dataset Information

Understanding the Impact of Equitable Collaborations between Science Institutions and Community-Based Organizations: Improving Science through Community-Led Research.

ABSTRACT: To advance justice, equity, diversity, and inclusion in science, we must first understand and improve the dominant-culture frameworks that impede progress and, second, we must intentionally create more equitable models. The present authors call ourselves the ICBOs and Allies Workgroup (ICBOs stands for independent community-based organizations), and we represent communities historically excluded from the sciences. Together with institutional allies and advisors, we began our research because we wanted our voices to be heard, and we hoped to bring a different perspective to doing science with and not on communities. We created a community framework to guide our research and we led all aspects of our work, from creating research protocols to analyzing and interpreting the data to disseminating the results. We share our research framework, methods, and results so that science institutions can better understand how to intentionally create more equitable research partnerships with our communities.

SUBMITTER: ICBOs and Allies Workgroup

PROVIDER: S-EPMC9169893 | biostudies-literature | 2022 Jun

REPOSITORIES: biostudies-literature

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Understanding the Impact of Equitable Collaborations between Science Institutions and Community-Based Organizations: Improving Science through Community-Led Research.

Bioscience 20220322 6

To advance justice, equity, diversity, and inclusion in science, we must first understand and improve the dominant-culture frameworks that impede progress and, second, we must intentionally create more equitable models. The present authors call ourselves the ICBOs and Allies Workgroup (ICBOs stands for independent community-based organizations), and we represent communities historically excluded from the sciences. Together with institutional allies and advisors, we began our research because we ...[more]

PMID: 35677289

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Project description:BackgroundEmbedding evidenced-based programs (EBPs) like PEARLS outside clinical settings can help reduce inequities in access to depression care. Trusted community-based organizations (CBOs) reach older adults who are underserved; however, PEARLS adoption has been limited. Implementation science has tried to close this know-do gap, however a more intentional focus on equity is needed to engage CBOs. We partnered with CBOs to better understand their resources and needs in order to design more equitable dissemination and implementation (D&I) strategies to support PEARLS adoption.MethodsWe conducted 39 interviews with 24 current and potential adopter organizations and other partners (February-September 2020). CBOs were purposively sampled for region, type, and priority older populations experiencing poverty (communities of color, linguistically diverse, rural). Using a social marketing framework, our guide explored barriers, benefits and process for PEARLS adoption; CBO capacities and needs; PEARLS acceptability and adaptations; and preferred communication channels. During COVID-19, interviews also addressed remote PEARLS delivery and changes in priorities. We conducted thematic analysis of transcripts using the rapid framework method to describe the needs and priorities of older adults who are underserved and the CBOs that engage them, and strategies, collaborations, and adaptations to integrate depression care in these contexts.ResultsDuring COVID-19, older adults relied on CBO support for basic needs such as food and housing. Isolation and depression were also urgent issues within communities, yet stigma remained for both late-life depression and depression care. CBOs wanted EBPs with cultural flexibility, stable funding, accessible training, staff investment, and fit with staff and community needs and priorities. Findings guided new dissemination strategies to better communicate how PEARLS is appropriate for organizations that engage older adults who are underserved, and what program components are core and what are adaptable to better align with organizations and communities. New implementation strategies will support organizational capacity-building through training and technical assistance, and matchmaking for funding and clinical support.DiscussionFindings support CBOs as appropriate depression care providers for older adults who are underserved, and suggest changes to communications and resources to better fit EBPs with the resources and needs of organizations and older adults. We are currently partnering with organizations in California and Washington to evaluate whether and how these D&I strategies increase equitable access to PEARLS for older adults who are underserved.

Project description:BackgroundResearch priorities are best defined through engagement with communities who will be impacted by the research and have lived experience of the topics to be studied. We aimed to establish a pediatric rare disease community stakeholder group and empower them in (1) eliciting perspectives from affected families in the wider region and (2) synthesizing collective ideas into a research agenda focused on shared ethical, legal, and social implications (ELSI) across rare disease.MethodsThis two-year project utilized a community-centered approach to engage rare disease community members as equal partners in developing a research agenda for ELSI in rare disease. We established "Rare Voices" (RV), a 22-member stakeholder group of patients, parents, clinicians and researchers. Following capacity-building trainings, RV designed and conducted listening sessions with teen patients and parents of children with rare diseases to explore challenges, positive experiences, and ethical concerns. Listening session findings were synthesized and contextualized into research topics, which RV members further refined and prioritized. We used established measures to assess RV member engagement and satisfaction.ResultsFrom 14 listening sessions with parents (n = 52) and teen patients (n = 13), RV identified eight core research topics as most important for future rare disease research: coordinating care, communication, accessing resources and care, impact on family unit, community and support in society, mental health and identity, ethical aspects of care, and uncertainty. RV members were highly engaged throughout the two-year project and reported high levels of satisfaction with the experience and research agenda.ConclusionsThrough capacity-building and authentic engagement, this project resulted in a community-led rare disease research agenda to guide future rare disease ELSI research that aligns with patients' and families' priorities. An environment of equal partnership and respect created a space for mutual learning where community members were empowered to shape the research agenda based on their collective experiences. The agenda recognizes the shared psychosocial and healthcare experiences of rare disease and offers practical areas of research to address patient and family needs.

Dataset Information

Understanding the Impact of Equitable Collaborations between Science Institutions and Community-Based Organizations: Improving Science through Community-Led Research.

Publications

Understanding the Impact of Equitable Collaborations between Science Institutions and Community-Based Organizations: Improving Science through Community-Led Research.

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