Developing a city-wide, community-engaged cancer disparities research agenda.

INTRODUCTION: In response to high levels of cancer disparities in Philadelphia, PA, three NCI-designated clinical cancer centers formed Philadelphia Communities Conquering Cancer (PC3) to bring stakeholders together and establish infrastructure for future cancer reducing initiatives. The PC3 coalition aimed to develop a prioritized cancer disparities research agenda in order to align cancer center resources and research interests with the concerns of the community about cancer, and to ensure that initiatives were patient- and community-centered. METHODS: Agenda development activities culminated in a city-wide cancer disparities conference. The conference, attended by 55 diverse stakeholders, was the venue for small group discussion sessions about cancer concerns related to prevention, early detection, treatment, survivorship, and quality of life. Sessions were guided by a moderator guide and were audiorecorded, transcribed, and analyzed by the PC3 leadership team. Results were reviewed and consensus was achieved with the help of PC3's Stakeholder Advisory Committee. RESULTS: Stakeholders identified four thematic areas as top priorities for cancer disparities research and action in Philadelphia: communication between patients, providers, and caregivers; education that reaches patients and community members with tailored and targeted information; navigation that assists people in finding and accessing the right cancer screening or treatment option for them; and representation that diversifies the workforce in clinics, cancer centers, and research offices. CONCLUSION: A community-informed, prioritized research agenda provides a road map for the three cancer centers to collaborate on future initiatives that are important to patients and stakeholders, to ultimately reduce the burden of cancer for all Philadelphians.

A qualitative study on opportunities to improve research engagement and inclusion of Black adults with systemic lupus erythematosus.

In response to racial inequities in systemic lupus erythematosus (SLE), we aimed to identify practical recommendations for increasing engagement and inclusion of Black adults in SLE research. We used a qualitative, interpretive description approach and recruited 30 Black adults diagnosed with SLE in Michigan to participate in semi-structured interviews. Theme development focused on what factors influenced research perceptions and how research did not meet participant needs and expectations. We developed five main themes: (1) Ethical and equitable research. Participants shared how the impacts of past and present-day racism impacted their willingness to participate in research. (2) Trusting researchers to conduct studies and translate findings to health care. Participants had concerns related to researcher intentions and expressed the importance of communicating research outcomes to participants and translating findings to health care. (3) Drug trial beneficence. When considering drug trials, several people did not consider the potential benefits worth the risk of side effects, and some said they would need to consult with their doctor before agreeing to participate. (4) Altruism. Participants explained how the desire to help others was a motivating factor for participating in research and donating biological samples. (5) Research priorities. Participants described a need for better treatments that value their overall health and well-being. Findings indicate that researchers can center the perspectives of Black people with SLE across the research life cycle-beyond a focus on adequate racial diversity among study participants.

Discontinuing the Term "Stakeholder" From the NIA IMPACT Collaboratory Engaging Partners Team: An Example of the Process of Language Change in an Organization.

In this paper, we describe our process of changing language of the National Institute on Aging Imbedded Pragmatic Alzheimer's disease and AD-related dementias Clinical Trials Collaboratory (NIA IMPACT Collaboratory) "Stakeholder Engagement Team" to "Engaging Partners Team" in response to feedback from community partners regarding the problematic connotations of the term "stakeholder." We present a brief history of the term "stakeholder" and its use in clinical and community-engaged research. Then, we summarize critiques of this term, including its colonial history and potential to reinforce complacency with generational traumas, particularly among Indigenous peoples and communities. We conclude with a detailed overview of our team and organization's multi-step process to discontinue use of the term "stakeholder," in alignment with a theoretical model of organizational behavior change. This paper highlights the importance of critically evaluating language and responding to community partners. We hope our process can guide other researchers and organizations.

Through the eyes of Spanish-speaking patients, caregivers, and community leaders: a qualitative study on the in-patient hospital experience.

BACKGROUND: Spanish-speakers with non-English language preference and complex medical needs suffer disparities in quality of care, safety, and health outcomes. Communication challenges during prolonged hospitalizations for complex illnesses negatively influence how this group engages in their care and decision-making while hospitalized. Limited literature capturing the perspectives of Spanish-speaking patients in this context exists. Given the impact of language barriers on care and medical decision-making, this study documents the experiences of Spanish-speaking patients with NELP and hospitalized with complex care needs as well as caregivers and community leaders. METHODS: Using community-engaged recruitment strategies and semi-structured interviews and a focus group, we gathered insights from Spanish-speaking patients hospitalized for prolonged periods, caregivers, and community leaders from three geographic regions. Data were deidentified, transcribed, translated, coded in duplicate, and analyzed guided by grounded theory using NVivo. RESULTS: We interviewed 40 participants: 27 patients, 10 caregivers and 3 community leaders. We identified four major themes: (1) Disconnected experiences impeding interactions, communication, and decision-making (2) Inadequate interpreter services (3) Benefits and consequences of family at the bedside (4) Community -informed recommendations. CONCLUSION: The study showed that in-person interpreters were preferred to virtual interpreters; yet interpreter access was suboptimal. This resulted in ad hoc family interpretation. Participants noted language negatively impacted patient's hospital experience, including decreasing confidence in medical decision-making. Recommendations from patients, caregivers, and community leaders included expanding interpreter access, bolstering interpreter quality and accuracy, and increasing resources for patient education.

Partnering With Food Pantries to Disseminate and Implement Eating Disorder Interventions.

OBJECTIVE: Food insecurity is associated with eating disorder psychopathology. This Spotlight describes why food pantries could be promising partners for disseminating and implementing eating disorder interventions. METHOD: Researchers are increasingly collaborating with community-based organizations to improve access to health interventions, because community-based organizations overcome structural barriers to traditional healthcare by being embedded physically in the communities they serve, convenient to visit, regularly frequented, and led by trusted community members. RESULTS: We describe strategies we have identified with our partner to disseminate and implement our digital intervention for binge eating; we also discuss ways we support the pantry's needs to improve the mutuality of the partnership. DISCUSSION: The potential benefits of partnerships with food pantries make this an area to explore further. Future research directions include deeply engaging with food pantries to determine how pantries benefit from disseminating and implementing eating disorder interventions and how to intervene in non-stigmatizing ways, what resources they need to sustainably support these efforts, what eating disorder intervention modalities guests are willing and able to engage with, what intervention adaptations are needed so individuals with food insecurity can meaningfully engage in eating disorder intervention, and what implementation strategies facilitate uptake to intervention sustainably over time.

Community-engaged research: Bringing the science of developmental psychopathology into the real world.

The science of developmental psychopathology has made outstanding progress over the past 40 years in understanding adaptive and maladaptive developmental processes across the life span. Yet most of this work has been researcher driven with little involvement of community partners in the research process, limiting the potential public health significance of our work. To continue to advance the field we must move beyond the physical and conceptual walls of our research laboratories and into the real world. In this article, we define and describe the importance of community-engaged research, and present our overarching principles for engaging the community including practicing respect, shared power and decision-making, prioritizing the needs of the community, and engaging in consistent and transparent communication. We present several associated recommendations for best practice and highlight examples from our own research that is grounded in a developmental psychopathology perspective to illustrate these practices. Recommendations for the future of the discipline of development and psychopathology, with emphasis on training and continuing education, are described.

"In our community, we normalize pain": discussions around menstruation and uterine fibroids with Black women and Latinas.

BACKGROUND: Uterine fibroids are non-cancerous neoplasms that arise from the uterus affecting over 75% of women. However, there is a disparity with Black women having an increased prevalence of nearly 80%. Black women also experience increased symptom burden, including younger age at the time of diagnosis and increased number and volume of fibroids. Less is known about other ethnoracially diverse women such as Latinas and the potential cultural impacts on fibroid burden and treatment. METHODS: Community engagement studios were conducted to facilitate discussions with stakeholders on their uterine fibroid and menstruation experience. We recruited Black women (n = 6) diagnosed with uterine fibroids and Latinas (n = 7) without uterine fibroids. We held two virtual community engagement studios split by uterine fibroid diagnosis. The studios were not audio recorded and notes were taken by four notetakers. The notes were thematically analyzed in Atlas.ti using content analysis. RESULTS: Participants felt there was a lack of discussion around menstruation overall, whether in the home or school settings. This lack of menstruation education was pronounced when participants had their first menstruation experience, with many unaware of what to expect. This silence around menstruation led to a normalization of painful menstruation symptoms. When it came to different treatment options for uterine fibroids, some women wanted to explore alternative treatments but were dismissed by their healthcare providers. Many participants advocated for having discussions with their healthcare provider about life goals to discuss different treatment options for their uterine fibroids. CONCLUSION: Despite uterine fibroid diagnosis, there is silence around menstruation. Menstruation is a normal biological occurrence and needs to be discussed to help prevent delayed diagnosis of uterine fibroids and possibly other gynecological disorders. Along with increased discussions around menstruation, further discussion is needed between healthcare providers and uterine fibroid patients to explore appropriate treatment options.

The Bidirectional Engagement and Equity (BEE) Research Framework to Guide Community-Academic Partnerships: Developed From a Narrative Review and Diverse Stakeholder Perspectives.

BACKGROUND: The engagement of community partners in equitable partnerships with academic teams is necessary to achieve health equity. However, there is no standardized approach to support bidirectional engagement among research stakeholders in the context of partnership equity at each phase of the research process. OBJECTIVE: We describe the development of a systematic framework along with competencies and tools promoting bidirectional engagement and equity within community-academic partnerships at each phase of the research process. DESIGN: We conducted a four-step research process between November 2020 and December 2023 for framework development: (1) a narrative literature review; (2) expansion of existing bidirectional, equitable framework; (3) a scientific review with two groups of cognitive interviews (five community engagement researchers and five community leaders and members); and (4) three community-based organization leader focus groups. Thematic analysis was used to analyse focus group data. RESULTS: Using results of each step, the framework was iteratively developed, yielding four phases of the bidirectional engagement and equity (BEE) research framework: Relationship building and assessment of goals and resources (Phase I); form a community-academic partnership based on shared research interests (may include multilevel stakeholders) (Phase II); develop a research team comprising members from each partnering organization (Phase III); and implement the six-step equitable research process (Phase IV). Bidirectional learning and partnership principles are at the core of the partnership, particularly in Phases II-IV. Competencies and tools for conducting an equitable, engaged research process were provided. DISCUSSION: This conceptual framework offers a novel, stepwise approach and competencies for community-academic partners to successfully partner and conduct the research process equitably. CONCLUSION: The BEE research framework can be implemented to standardize the conduct of an equitable, engaged research process within a community-academic partnership, while improving knowledge and trust across partners and, ultimately, an increased return on investment and sustainability to benefit both partners in the area of health outcomes and ultimately health equity. PATIENT OR PUBLIC CONTRIBUTION: The development of this framework was co-led with a community organization in which two leaders in the organization were equitably involved in each phase of the research process, including grant development, study design, participant recruitment, protocol development for focus groups and community and researcher review, framework design and content and dissemination of this manuscript as a co-author. For grant development, the community leader completed the give-get grid components for them as a partner. They also wrote up their lived experience in the research process for the progress report. For the focus groups, one community leader co-led the focus group with the academic partner. For the narrative review, the community leaders did not actively conduct the narrative review but observed the process through the academic partners. One community leader wrote the section 'relationship building' and 'bidirectional learning' sections with the assistance of the academic partner, while they both equally provided input on other sections of the manuscript alongside academic partners. The community leaders have extensive experience in leading programmes, along with partnering with researchers to address health equity issues and improve health outcomes.

Inconvenient sampling: Community-engaged and restorative justice approaches to genetic counseling student research.

Genetic counseling research requires a comprehensive approach since it frequently serves as the foundation for clinical care practice. Genetic counseling students play a pivotal role in advancing the profession, as they contribute a significant proportion of the research conducted within the genetic counseling community. However, a prevailing trend of convenience sampling of genetic counselors has limited the diversity of perspectives in student research projects. This article promotes a strategy for greater inclusivity and equity in research by emphasizing community-engaged and empowered research through the perspective of restorative justice. Reflecting on the shadow of the harmful ideologies of eugenics in our profession underscores the need to amplify patients' voices and diverse experiences. Community-engaged research-in collaboration with individuals, families, and communities directly impacted by genetic counseling-transcends traditional research paradigms, empowering patients and addressing systemic inequities. Incorporating community-engaged research into genetic counseling student projects aims to empower future professionals to better understand patient perspectives and needs while working toward addressing historical injustices. This article explores the potential benefits and pathways of incorporating community-engaged research and restorative justice principles into genetic counseling scholarly work, promoting empathy, cultural responsiveness, and ultimately, a more patient-centered approach to research and clinical care. By embracing this collective journey toward authentic partnership in the production of high-quality evidence in genetic counseling student research and more broadly, genetic counseling can become a more just and inclusive practice.

Building Capacity for Research on Community Doula Care: A Stakeholder-Engaged Process in California.

PURPOSE: In an effort to address persistent inequities in maternal and infant health, policymakers and advocates have pushed to expand access to doula care. Several states, including California, now cover doula services through Medicaid. As coverage expands, research on the impact of doula care will likely increase. To develop best practices for research, it is critical to engage community doulas, clients, and other key stakeholders. DESCRIPTION: Our overarching goal was to build capacity for future doula- and client-centered research on community doula care. First, we established a Steering Committee with members from seven relevant stakeholder groups: community doulas, former or potential doula clients, clinicians, payers, advocates, researchers, and public health professionals. Second, we conducted a needs assessment to identify and understand stakeholders' needs and values for research on community doula care. Findings from the needs assessment informed our third step, conducting a research prioritization to develop a shared research agenda related to community doula care with the Steering Committee. We adapted the Research Prioritization by Affected Communities protocol to guide this process, which resulted in a final list of 21 priority research questions. Lastly, we offered a training to increase capacity among community doulas to engage in research on community doula care. ASSESSMENT: Our findings provide direction for those interested in conducting research on doula care, as well as policymakers and funders. CONCLUSION: The findings of our stakeholder-engaged process provide a roadmap that will lead to equity-oriented research centering clients, doulas, and their communities.

Electronic health record reveals community-level cardiometabolic health benefits associated with 10 years of community-based participatory research.

BACKGROUND: While a major goal of community-based participatory research (CBPR) is to improve community health; it is unclear how to measure longstanding success of CBPR. OBJECTIVE: We sought to determine the impact of ongoing CBPR on cardiometabolic health of participating communities, including in people not directly participating in research. METHODS: We used linear mixed-effects modelling with electronic medical records from 2002 to 2012 from the Yukon-Kuskokwim Health Corporation, which provides health care to all Alaska Native people in southwestern Alaska, to compare rates of change in cardiometabolic risk factors between communities that did and did not participate in ongoing CBPR beginning in 2003. RESULTS: We analysed 1,262,035 medical records from 12,402 individuals from 10 study and 38 control communities. Blood pressure declined faster in study than in control communities: systolic blood pressure (0.04 mmHg/year; 95% confidence interval [CI]: 0.01, 0.08); diastolic blood pressure (DBP) (0.07 mmHg/year; 95% CI: 0.04, 0.09). Body mass index increased 0.04 units/year faster in study communities than in control communities (95% CI: 0.03, 0.05). More study visits were associated with faster reduction of DBP and triglyceride levels in study communities. CONCLUSIONS: Ongoing CBPR may improve overall cardiometabolic health in communities, perhaps by increasing engagement in health and advocacy.

Is peer support a tipping point for the opioid use disorder crisis in Appalachia? Research holds the answer.

BACKGROUND: The present commentary highlights the pressing need for systematic research to assess the implementation and effectiveness of medications for opioid use disorder, used in conjunction with peer recovery support services, to improve treatment outcomes for individuals with opioid use disorder in Central Appalachia. This region, encompassing West Virginia, Eastern Kentucky, Southwest Virginia, East Tennessee, and Western North Carolina, has long grappled with a disproportionate burden of the opioid crisis. Due to a complex interplay of cultural, socioeconomic, medical, and geographic factors, individuals in Central Appalachia face challenges in maintaining treatment and recovery efforts, leading to lower success rates. APPROACH: To address the issue, we apply an exploratory approach, looking at the intersection of unique regional factors with the utilization of medications for opioid use disorder, in conjunction with peer recovery support services. This combined treatment strategy shows promise in addressing crucial needs in opioid use disorder treatment and enhancing the recovery journey. However, there are significant evidence gaps that need to be addressed to validate the expected value of incorporating peer support into this treatment strategy. CONCLUSION: We identify nine obstacles and offer recommendations to address the gaps and advance peer recovery support services research. These recommendations include the establishment of specific partnerships and infrastructure for community-engaged, peer recovery support research; improved allocation of funding and resources to implement evidence-based practices such as peer support and medication-assisted treatment; developing a more precise definition of peer roles and their integration across the treatment and recovery spectrum; and proactive efforts to combat stigma through outreach and education.

Increasing research study engagement in minoritized populations: An example from the Black Women Inflammation and Tau Study.

Black women are sorely underrepresented in studies of Alzheimer's disease and related dementias (ADRD) despite higher rates of ADRD diagnoses than in non-Hispanic White women. There are many reasons for underrepresentation, including medical mistrust, limited access to clinical studies, and restrictive study inclusion criteria. These pervasive barriers to research participation are often not considered during study development and, if eventually thought of tend to be after the fact. Community-engaged research (CER) approaches are an effective method for reducing participation barriers. This article describes how CER approaches were used to develop the Black Women Inflammation and Tau Study (BWITS), a prospective study to identify biopsychosocial risk factors for ADRD in Black women. Guidelines discussed here for future ADRD research in diverse populations are informed by Community-Based Participatory Research (CBPR), the National Institute on Minority Health and Health Disparities (NIMHD), and the Patient-Centered Outcomes Research Institute (PCORI). HIGHLIGHTS: Understand the historical tragedies related to medical practices and research designs that may contribute to the underrepresentation of Black Americans in research studies today. Highlight community-engaged research approaches that effectively reduce participation barriers in minoritized groups. Review Community-Based Participatory Research, National Institute of Minority Health and Health Disparities, and the Patient-Centered Outcomes Research Institute guidelines for conducting research with minoritized communities. Describe using the three frameworks to inform the study development protocol for the Black Women Inflammation and Tau Study. Conclude by offering study design considerations that we hope can be a helpful starting point for others conducting research with minoritized communities.

The Alzheimer's Disease Neuroimaging Initiative-4 (ADNI-4) Engagement Core: A culturally informed, community-engaged research (CI-CER) model to advance brain health equity.

INTRODUCTION: The Alzheimer's Disease Neuroimaging Initiative-4 (ADNI-4) Engagement Core was launched to advance Alzheimer's disease (AD) and AD-related dementia (ADRD) health equity research in underrepresented populations (URPs). We describe our evidence-based, scalable culturally informed, community-engaged research (CI-CER) model and demonstrate its preliminary success in increasing URP enrollment. METHODS: URPs include ethnoculturally minoritized, lower education (≤ 12 years), and rural populations. The CI-CER model includes: (1) culturally informed methodology (e.g., less restrictive inclusion/exclusion criteria, sociocultural measures, financial compensation, results disclosure, Spanish Language Capacity Workgroup) and (2) inclusive engagement methods (e.g., the Engagement Core team; Hub Sites; Community-Science Partnership Board). RESULTS: As of April 2024, 60% of ADNI-4 new in-clinic enrollees were from ethnoculturally or educationally URPs. This exceeds ADNI-4's ≥ 50% URP representation goal for new enrollees but may not represent final enrollment. DISCUSSION: Findings show a CI-CER model increases URP enrollment in AD/ADRD clinical research and has important implications for clinical trials to advance health equity. HIGHLIGHTS: The Alzheimer's Disease Neuroimaging Initiative-4 (ADNI-4) uses a culturally informed, community-engaged research (CI-CER) approach. The CI-CER approach is scalable and sustainable for broad, multisite implementation. ADNI-4 is currently exceeding its inclusion goals for underrepresented populations.

Challenges in Disseminating Evidence-Based Health Promotion Programs in Faith Community Settings: What We Need to Include.

BACKGROUND: Effective dissemination of information about evidence-based programs (EBPs) is essential for promoting health equity. Faith-based and other community organizations have difficulty locating EBPs for implementation in their settings. A research team engaged in a systematic search to identify a menu of EBPs that could be offered to African American FBOs as part of a community-engaged implementation study. Methods. A four-stage process was developed to search for EBPs meeting seven inclusion criteria for dissemination in faith-based organizations (FBOs). Criteria included relevance to identified health disparity topics, endorsement on a federal website, free access to downloadable program materials, facilitator guidance, no requirements for health care providers, and culturally relevant materials for African American communities. RESULTS: Nineteen government websites were searched. Sixty-six potential EBPs were identified. Six EBPs met all inclusion criteria. DISCUSSION: The search for EBPs that met seven criteria for implementation in African American FBOs demonstrated challenges that have been described in the literature. Researchers encountered a lack of standardized terminology for identifying EBPs on federal websites, frequent requirement for health care providers or clinics and/or fees for training and materials. FBOs are supportive and safe places to offer EBPs to promote health, and EBPs need to be designed and disseminated to meet the needs and preferences of FBOs. Including members of FBOs and others in the community in EBP development, design, and dissemination, such as searchable health promotion EBP registries, can increase the likelihood that effective programs intended to address health disparities are readily accessible to FBOs for implementation.

Decolonizing approaches for transforming academic culture through authentic expression, community, and belonging.

The National Commission to Address Racism in Nursing (2022) cites structural and systemic racism in nursing education as significant factors contributing to retention disparities among minoritized students. Establishing a culture of belonging was outlined in the Commission's report as essential to addressing these disparities. At the University of California, Irvine, the Centering Youth & Families for Empowerment and Resilience (CYFER) Lab embraces belonging and collectivity as core principles. The CYFER Lab supports the well-being and professional development of minoritized and/or marginalized health sciences students through community-engaged research and self-care practices. Our commentary examines three core Lab practices-Buen Vivir, prioritizing well-being, and nonhierarchical structures-through the lens of decolonization, an approach we posit can enhance inclusivity and belonging in nursing education. The achievements and growth of our Lab members, along with our expanding body of community-based research, demonstrate that such practices provide an effective alternative model for success in research and education.

Engaging Indigenous communities in research to inform practice: The multisite implementation evaluation of Tribal home visiting.

Community engagement (CE) is widely acknowledged as a way to enhance the ethics, rigor, and impact of research. Additionally, CE is a demonstrated way to integrate Indigenous and colonial (western) research systems. For these reasons and others, designers of the Multi-site Implementation Evaluation of Tribal Home Visiting (MUSE) used a community-engaged approach to study the implementation of federally funded home-visiting programs across 17 Indigenous communities throughout the United States. This paper describes MUSE's community-engaged approach and its practical applications from the perspective of the MUSE study team. The paper highlights key outcomes attributable to CE, addresses barriers to CE, and details responses to these barriers and their impacts. Adding to the rich evidence base demonstrating the value of community-engaged approaches, MUSE demonstrates that in-depth CE is feasible and valuable in multisite studies done in partnership with Indigenous communities.

La incorporación de la comunidad es reconocida ampliamente como una manera de mejorar la ética, el rigor y el impacto de la investigación. Adicionalmente, la incorporación de la comunidad es una manera que ha demostrado la integración de los sistemas de investigación indígenas y coloniales (occidentales). Por estas y otras razones, quienes diseñaron el programa de Implementación de la Evaluación de Visitas a Casa en Múltiples Lugares Tribales (MUSE) hicieron uso de un acercamiento de participación de la comunidad para estudiar la implementación de programas de visitas a casa subvencionados federalmente a lo largo de 17 comunidades indígenas esparcidas dentro de los Estados Unidos. Este ensayo describe el acercamiento de participación comunitaria de MUSE y sus aplicaciones prácticas desde la perspectiva del equipo de estudio de MUSE. El estudio enfatiza los resultados claves atribuibles a la participación de la comunidad, aborda barreras relacionadas con la participación de la comunidad y detalla las respuestas a esas barreras y al impacto que ellas ejercen. Como un aporte más a la rica base de evidencias que demuestra el valor de los acercamientos de participación comunitaria, MUSE demuestra que una profunda participación de la comunidad es posible y de mucho valor en múltiples estudios realizados en conjunto con las comunidades indígenas.

Using a community engaged research approach to develop the social skills training program for adults with Williams syndrome.

This article describes the development of a distance-delivered social skills training program for adults with Williams syndrome (SSTP-WS) through a community engaged approach. Throughout six phases of development, the research team received input from adults with Williams syndrome, caregivers, service providers, educators, and researchers on (a) the need for a training program and topics to be addressed (Phase 1), (b) an initial draft of the SSTP-WS (Phase 3), (c) the intervention pilot study (Phase 5), and (d) feedback to provide context for the results of the study (Phase 6). The development of the SSTP-WS resulted in an intervention aligned with the Williams syndrome community's values and needs that supports the unique cognitive and behavioral phenotypes and social characteristics of this low incidence disability population.

A practical method for integrating community priorities in planning and implementing cancer control programs.

PURPOSE: Community engagement is essential in effective public health programs. This paper illustrates the methods used to engage community in the development of a multi-level implementation intervention to address cancer disparities related to hereditary cancer syndromes. METHODS: Implementation Mapping (IM), was used to guide the co-creation of an intervention. Key partners were recruited to a 13-member statewide community advisory board (CAB) representing healthcare and community-based organizations. As part of a needs assessment, a 3-round modified Delphi method with the CAB was used to identify implementation outcomes to use in later steps of IM. An anonymous online survey of a validated community engagement measure assessed CAB members' satisfaction with the process. RESULTS: Using a modified Delphi method as part of the needs assessment of IM, the CAB identified three broad categories of strategies: Changing infrastructure using patient navigation; training and educating patients, navigators and providers; and supporting clinicians in case identification and management. Self-reported satisfaction with the IM and Delphi process was high. CONCLUSIONS: Implementation Mapping facilitated the use of available evidence, new data, and community engagement to identify strategies to improve the delivery of programs to reduce hereditary cancer disparities. The modified Delphi method was easy to administer in a virtual environment and may be a useful for others in community-engaged research.

Implementing community-engaged ecological research in Proctor Creek, an urban watershed in Atlanta, Georgia, USA.

The Southeast Region of the United States Fish and Wildlife Service (USFWS) implemented community-engaged research in Proctor Creek, an urban watershed in Northwest Atlanta, Georgia, to sample for aquatic species of concern in Atlanta, Georgia's Proctor Creek Watershed as a part of the Urban Waters Federal Partnership program. This research shifted the focus of the agency from the endangered and pristine natural spaces to a major city watershed negatively impacted by urbanization and other human influences for more than a century. Team members from USFWS, Proctor Creek Watershed residents, local students, and other stakeholders in the Urban Waters Federal Partnership (UWFP) spent three months conducting stream surveys and participating in community-led events to build relationships and learn community priorities. The team collected data at 11 sites throughout the Proctor Creek Watershed, visually assessed each site, and collected aquatic species using dip nets, seines, and traps. We observed approximately 28 aquatic species, including 13 unique fish species, and eight macroinvertebrate species, including two unique crayfish species. We also observed varying degrees of ecological health throughout the watershed. Native aquatic animal species were found at all stream sites, no matter the condition of the stream. Through creating training resources and disseminating data among team members for future sampling, the team established pathways to keep natural resource stewardship sustainable without direct federal involvement. Through engaging in community-engaged research to achieve the mission of the agency, the USFWS Proctor Creek Watershed survey helped shift the paradigm of how government agencies can connect their mission statements to the ever-changing complex needs of the American public.