Community-identified Priorities Research Articles

Indigenous methodologies walking together in a good way: urban Indigenous collective governance in health research

Indigenous methodology is a living methodology of doing research in a good way that honours respectful relationships with Indigenous Peoples and communities in which knowledge is co-created and ownership is shared. Guided by Indigenous methodologies, the Urban Indigenous Collective Governance Circle was co-developed for urban Indigenous health research. The Collective Governance uses approaches that stay true to the connectedness of Traditional Knowledges, Indigenous protocols, and relational processes. Relationality ensures guidance from knowledge, experiences, and wisdom of community members participating in, leading, and benefitted by the research. The Governance Circle ensures that self-determination and self-governance is realized through Indigenous health research; research responsive to community-identified priorities, leadership, control, approval, and community ownership. The Collective Governance embraces ethical, respectful, and reciprocal research through a shared process to address health equity for urban Indigenous Peoples. We share insights and recommendations on how to support meaningful urban Indigenous-led community health research.

Population Health Improvement Awards: Supporting Community and Academic Capacity to Partner in Research and Improve Population Health.

The Duke Clinical and Translational Science Institute Community Engaged Research Initiative began its Population Health Improvement Awards grant program in 2017. This program builds community-engaged research capacity by promoting the formation of community-academic research teams, educating researchers about equitable partnerships, and empowering community members and organizations to access academic research resources. With a focus on community-identified priorities, the program purposefully engages local communities in an enterprise that has traditionally labeled community members as "participants" rather than "partners." Key elements of the program include innovation, relationship building, and power sharing; education and research system navigation; iterative adaptation using the Plan-Do-Study-Act framework; and continual program improvements based on applicant feedback to ensure that the program becomes a national leader in funding local community-engaged research partnerships.

Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities for ultra-rare inherited bleeding disorders

ABSTRACT Background Ultra-rare inherited bleeding disorders (BDs) present important challenges for generating a strong evidence foundation for optimal diagnosis and management. Without disorder-appropriate treatment, affected individuals potentially face life-threatening bleeding, delayed diagnosis, suboptimal management of invasive procedures, psychosocial distress, pain, and decreased quality-of-life. Research design and methods The National Hemophilia Foundation (NHF) and the American Thrombosis and Hemostasis Network identified the priorities of people with inherited BDs and their caregivers, through extensive inclusive community consultations, to inform a blueprint for future decades of research. Multidisciplinary expert Working Group (WG) 3 distilled highly feasible transformative ultra-rare inherited BD research opportunities from the community-identified priorities. Results WG3 identified three focus areas with the potential to advance the needs of all people with ultra-rare inherited BDs and scored the feasibility, impact, and risk of priority initiatives, including 13 in systems biology and mechanistic science; 2 in clinical research, data collection, and research infrastructure; and 5 in the regulatory process for novel therapeutics and required data collection. Conclusions Centralization and expansion of expertise and resources, flexible innovative research and regulatory approaches, and inclusion of all people with ultra-rare inherited BDs and their health care professionals will be essential to capitalize on the opportunities outlined herein.

Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities in health services; diversity, equity, and inclusion; and implementation science

ABSTRACT Background The National Hemophilia Foundation (NHF) conducted extensive all-stakeholder inherited bleeding disorder (BD) community consultations to inform a blueprint for future research. Sustaining and expanding the specialized and comprehensive Hemophilia Treatment Center care model, to better serve all people with inherited BDs (PWIBD), and increasing equitable access to optimal health emerged as top priorities. Research Design and Methods NHF, with the American Thrombosis and Hemostasis Network (ATHN), convened multidisciplinary expert working groups (WG) to distill priority research initiatives from consultation findings. WG5 was charged with prioritizing health services research (HSR); diversity, equity, and inclusion (DEI); and implementation science (IS) research initiatives to advance community-identified priorities. Results WG5 identified multiple priority research themes and initiatives essential to capitalizing on this potential. Formative studies using qualitative and mixed methods approaches should be conducted to characterize issues and meaningfully investigate interventions. Investment in HSR, DEI and IS education, training, and workforce development are vital. Conclusions An enormous amount of work is required in the areas of HSR, DEI, and IS, which have received inadequate attention in inherited BDs. This research has great potential to evolve the experiences of PWIBD, deliver transformational community-based care, and advance health equity.

Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: facilitating research through infrastructure, workforce, resources and funding

ABSTRACT Background The National Hemophilia Foundation (NHF) conducted extensive, inclusive community consultations to guide prioritization of research in coming decades in alignment with its mission to find cures and address and prevent complications enabling people and families with blood disorders to thrive. Research Design and Methods With the American Thrombosis and Hemostasis Network, NHF recruited multidisciplinary expert working groups (WG) to distill the community-identified priorities into concrete research questions and score their feasibility, impact, and risk. WG6 was charged with identifying the infrastructure, workforce development, and funding and resources to facilitate the prioritized research. Community input on conclusions was gathered at the NHF State of the Science Research Summit. Results WG6 detailed a minimal research capacity infrastructure threshold, and opportunities to enable its attainment, for bleeding disorders centers to participate in prospective, multicenter national registries. They identified challenges and opportunities to recruit, retain, and train the diverse multidisciplinary care and research workforce required into the future. Innovative collaborative approaches to trial design, resource networking, and funding to surmount obstacles facing research in rare disorders were elucidated. Conclusions The innovations in infrastructure, workforce development, and resources and funding proposed herein may contribute to facilitating a National Research Blueprint for Inherited Bleeding Disorders.

Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities for mucocutaneous bleeding disorders

ABSTRACT Background Excessive or abnormal mucocutaneous bleeding (MCB) may impact all aspects of the physical and psychosocial wellbeing of those who live with it (PWMCB). The evidence base for the optimal diagnosis and management of disorders such as inherited platelet disorders, hereditary hemorrhagic telangiectasia (HHT), hypermobility spectrum disorders (HSD), Ehlers-Danlos syndromes (EDS), and von Willebrand disease (VWD) remains thin with enormous potential for targeted research. Research design and methods National Hemophilia Foundation and American Thrombosis and Hemostasis Network initiated the development of a National Research Blueprint for Inherited Bleeding Disorders with extensive all-stakeholder consultations to identify the priorities of people with inherited bleeding disorders and those who care for them. They recruited multidisciplinary expert working groups (WG) to distill community-identified priorities into concrete research questions and score their feasibility, impact, and risk. Results WG2 detailed 38 high priority research questions concerning the biology of MCB, VWD, inherited qualitative platelet function defects, HDS/EDS, HHT, bleeding disorder of unknown cause, novel therapeutics, and aging. Conclusions Improving our understanding of the basic biology of MCB, large cohort longitudinal natural history studies, collaboration, and creative approaches to novel therapeutics will be important in maximizing the benefit of future research for the entire MCB community.

Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities to transform the care of people with hemophilia

ABSTRACT Background Decades of research have transformed hemophilia from severely limiting children’s lives to a manageable disorder compatible with a full, active life, for many in high-income countries. The direction of future research will determine whether exciting developments truly advance health equity for all people with hemophilia (PWH). National Hemophilia Foundation (NHF) and American Thrombosis and Hemostasis Network conducted extensive inclusive all-stakeholder consultations to identify the priorities of people with inherited bleeding disorders and those who care for them. Research design and methods Working group (WG) 1 of the NHF State of the Science Research Summit distilled the community-identified priorities for hemophilia A and B into concrete research questions and scored their feasibility, impact, and risk. Results WG1 defined 63 top priority research questions concerning arthropathy/pain/bone health, inhibitors, diagnostics, gene therapy, the pediatric to adult transition of care, disparities faced by the community, and cardiovascular disease. This research has the potential to empower PWH to thrive despite lifelong comorbidities and achieve new standards of wellbeing, including psychosocial. Conclusions Collaborative research and care delivery will be key to capitalizing on current and horizon treatments and harnessing technical advances to improve diagnostics and testing, to advance health equity for all PWH.

Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research to advance the health of people with inherited bleeding disorders with the potential to menstruate

ABSTRACT Background People who have or had the potential to menstruate (PPM) with inherited bleeding disorders (BD) face particular challenges receiving appropriate diagnosis and care and participating in research. As part of an initiative to create a National Research Blueprint for future decades of research, the National Hemophilia Foundation (NHF) and American Thrombosis and Hemostasis Network conducted extensive all-stakeholder consultations to identify the priorities of PPM with inherited BDs and those who care for them. Research design and methods Working group (WG) 4 of the NHF State of the Science Research Summit distilled community-identified priorities for PPM with inherited BDs into concrete research questions and scored their feasibility, impact, and risk. Results WG4 identified important gaps in the foundational knowledge upon which to base optimal diagnosis and care for PPM with inherited BDs. They defined 44 top-priority research questions concerning lifespan sex biology, pregnancy and the post-partum context, uterine physiology and bleeding, bone and joint health, health care delivery, and patient-reported outcomes and quality-of-life. Conclusions The needs of PPM will best be advanced with research designed across the spectrum of sex and gender biology, with methodologies and outcome measures tailored to this population, involving them throughout.

Community-engaged participatory climate research with the Pyramid Lake Paiute Tribe

Climate change’s threat to the identity, culture, economy, and livelihoods of the Pyramid Lake Paiute Tribe (PLPT) can be better understood through community-engaged participatory methods. Our research team of Indigenous and non-Indigenous scientists formed a tribal-university partnership with the PLPT Council to understand how climate change and upstream pressures threaten PLPT ecosystems, lands, and resources. The objectives are to: (1) consider how decolonizing, Indigenizing, and participatory methodologies can inform climate research engagement between scientists and Indigenous partners; (2) understand PLPT perspectives of climate change impacts and priorities for climate research; and (3) engage the PLPT community in climate change discussion. Working with the PLPT Natural Resources Department, in accordance with PLPT research protocols, we convened a community-driven climate workshop in which environmental managers and community members identified environmental challenges, affected stakeholders, and potential solutions. The workshop participants emphasized the importance of water, culturally significant species, and the role of community in climate adaptation. These community-identified priorities highlighted the need to develop interpretive climate resources for community members, including a video summary of fish ecology. Overall, our collaboration with the PLPT benefited from greater community involvement, increased awareness of PLPT commitment to climate research, an iterative engagement process, prioritization of community perspectives, and incorporation of PLPT feedback on research outcomes. From our positionality as Indigenous environmental scientists, we conclude that decolonizing, Indigenizing, and participatory action approaches to climate research with Indigenous partners should strive for accountability to community research protocols and priorities; practical and useful outcomes; and empathetic and respectful engagement with research participants.

Out of the Ivory Tower: Successes From a Community-Engaged Structural Competency Curriculum.

To the Editor: We appreciate Barwise and Liebow’s comments 1 on Sharma and colleagues’ article 2 about teaching the social determinants of health (SDOH), and we concur with Sharma and colleagues’ response 3 that institutions, not trainees, bear primary responsibility for changing the way SDOH are taught. In the wake of national conversations on addressing the devastating health impacts of structural racism across the medical education continuum, community-engaged approaches can enhance both theoretical and personal understanding of the SDOH. Our insights from implementing a structural competency curriculum may add an informative viewpoint.4 In fall 2019, our institution (University of Nebraska Medical Center) implemented a first-year medical student curriculum called “Structural Challenges and Inequities in Healthcare Delivery.” We (a medical student, a director of community engagement, and an infectious diseases physician) designed and continue to refine this curriculum in collaboration with 18 community stakeholders, ranging from the owner of a local soul food restaurant to the leader of our city’s largest public housing agency. Our shared mission is simple: get students out of the “ivory tower” of academia and into the community, and ensure that community stakeholders are at the table throughout development, facilitation, and evaluation of the curriculum. As Sharma and colleagues discuss, 2 our approach seeks to build structural competence by reforming SDOH curricula to meaningfully address “physician–patient and physician–society dynamics.” Our institutional investment in this effort and the subsequent student outcomes contradict Barwise and Liebow’s 1 assertion that shifting curricula in this direction is too formidable a task. The curriculum’s accompanying didactic components include lectures highlighting the sociopolitical forces driving local inequities, reflective writing, and a capstone project asking students to propose a health intervention in response to community-identified priorities. Learners’ feedback has been clear: they have overwhelmingly indicated that they find the curriculum valuable for their professional development, highlighted community-engaged components as the most impactful, and expressed desire for additional depth of training. To us, this clearly illustrates that medical students are motivated to learn about structural inequity and crave direct, community-led teaching within formal SDOH education. We are not the first group to successfully implement curricular reforms of this nature, and we firmly believe we will not be the last. Author’s Note: While the COVID-19 pandemic resulted in necessary changes to the curriculum’s second iteration this year, we sustained a focus on our proximate community through the addition of novel content that addressed structural causes of local COVID-19 inequities. We intend to reintegrate the community-based experiences when safely able.

A Participatory, State-Community-Academic Model to Improve Pregnancy Outcomes in Texas: The Healthy Families Initiative.

While the Texas infant mortality rate (IMR) is below the Healthy People 2020 objective (5.7 per 1,000 live births), stark differences in IMR are seen across Texas communities. Health indicators for the state suggest important missed opportunities for improving maternal and infant outcomes. The Healthy Families initiative was a collaboration between a Texas state agency, community partners, and academic institutions to understand how evidence-based interventions could be identified, adapted, and implemented to address community priorities and reduce disparities in pregnancy outcomes. The Healthy Families initiative included two Texas counties, one with low utilization of prenatal care and one with persistent disparities in infant mortality. The model served to (1) identify community factors influencing IMR and maternal morbidity through stakeholder engagement and secondary data, (2) build community capacity to link pregnant women with existing and newly developed services, and (3) develop partnerships within the community and clinics to improve access to and sustainability of services. A community-based participatory approach focused on stakeholder engagement was used to identify, design, and adapt strategies to address community-identified priorities. The Healthy Families initiative is a unique state-community-academic partnership aimed at improving pregnancy outcomes in vulnerable communities, with a focus on promotion of capacity building, maintenance, and sustainability of maternal and infant health programs.

Scenario Planning for Climate Adaptation in Agricultural Systems

Effective climate adaptation in sub-Saharan African agriculture will require coordination across multiple scales of governance. Decision-makers from local to national scales will be tasked with planning under conditions of high uncertainty, often with minimal data. Participatory scenario planning is a method for devising adaptation strategies under high uncertainty, and we hypothesized that it could also be used for identifying systemic, inclusive, and transformative adaptation options at the community scale, and for highlighting opportunities for cross-scalar collaboration. We conducted scenario exercises with two communities in southeastern Nigeria that have experienced increasing flooding and other challenges linked to climate variability. Both communities identified drivers of change that intersect with climate, as well as community-scale actions that would improve adaptation to a range of future scenarios. We found evidence that scenario exercises can stimulate communities to develop transformative approaches to climate adaptation that seek to reduce climate risk by creating new systems and processes. We also found that community-identified priorities for strategic action highlight how larger-scale interventions could coordinate with communities to adapt more effectively. Participatory scenario planning is therefore a potentially important tool for adaptation planning in regions in which future conditions are highly uncertain.

Expanding the Transformative Explanatory Sequential Mixed Methods Design Archetype in a Cross-Cultural Context: The Polemics of African Refugee Livelihoods in Places of Resettlement

Transformative sequential mixed methods design in a cross-cultural context is seldom straightforward. Using a community-based participatory research approach as the transformative lens in an African refugee context in the southern United Status, we explored: (a) the intersection of culture, financial stress, and financial self-efficacy and (b) tested the efficacy of financial literacy as the focus of a culturally responsive solution grounded in community-identified priorities. Through a three-phased explanatory sequential mixed methods design, we demonstrate how the addition of a third phase of analysis that focuses on convergence and expansion of quantitative and qualitative data integration and cyclical processes of dissemination and action can strengthen the utility of transformative mixed methods research in a cross-cultural context. Our study offers a unique contribution to the long-standing methodological dialogue between the design elements of mixed methods research, community-based participatory research, and migration studies by expanding the transformative explanatory sequential design archetype in a cross-cultural context.

Move the north: evaluation of a regional stakeholder engagement initiative to support the development of a community-partnered physical activity research agenda

BackgroundAlthough it is generally accepted that engaging with members of the public contributes to more actionable and relevant research, there are a limited number of reported evaluations of community engagement initiatives. Certain populations, such as those with lower socioeconomic status and those who live in rural or dispersed communities, tend to face increased barriers to engagement. For researchers and community members alike, it is important to understand and evaluate engagement initiatives to support participatory research methods, particularly when working with underserved or hard to reach populations.MethodsOver 2-days in October 2018, we hosted a Research Agenda Development Workshop and Physical Activity Summit with relevant researchers, health professionals, and community partners. The objectives of this initiative were to develop a physical activity research agenda based on community-identified priorities, create networking opportunities, and understand factors impacting physical activity participation in communities across northern British Columbia (BC). An evaluation plan was created early in the planning process to understand the reach of the event based on representation targets. Stakeholder satisfaction with the event was evaluated with a post-meeting survey.ResultsThe event was successful in engaging community members from a broad geographic region with at least 90 people in attendance from 11 different northern BC communities, representing 46 different organizations. Meeting attendees indicated they were satisfied with the event and felt their perspectives were heard. To advance physical activity in the region, the most commonly desired outcome from the event was the need for ongoing communication channels to support knowledge translation and capacity building in the low-resourced communities of northern BC. There were some gaps in representation targets present at the event. Namely, there were a limited number of people representing Indigenous organizations, and the education and private sectors.ConclusionsThis two-day event was successful at achieving its objectives and engaged a diverse group of stakeholders from a broad geographic region. The outcomes from this event are being used to develop a community-partnered physical activity research agenda and contribute to ongoing learning by the research team to understand contextual factors influencing physical activity in the communities of northern BC. This model of engagement could be used by other researchers interested in engaging with a diverse, multi-sector group of academics, health professionals and community members to support community-centered population health research.

Physical activity as a psychosocial intervention among Rohingya refugees in Bangladesh: a rapid ecological community assessment

Over 907,000 Rohingya refugees are currently living in mostly makeshift camps in Bangladesh with limited resources to address their psychosocial needs. Physical activity is a scalable, low-cost intervention effective for prevention and treatment of non-communicable diseases and mental health problems. Understanding community attitudes to physical activity and mental health is key to designing community endorsed and accessible interventions. We employed the ‘community readiness model’, a tool to assess community climate, needs and resources regarding physical activity as a community-driven psychosocial intervention. Fifteen Rohingya key informants were interviewed across multiple refugee camps in Cox’s Bazaar district in January 2019. Community readiness scores were calculated. Thematic analysis explored community-identified priorities. Community members strongly endorsed physical activity as an effective biopsychosocial strategy for relieving tension (a local idiom of distress). Despite leadership endorsement, space and resources to support community initiatives are extremely limited. For women, restrictions of movement were identified as barriers to participation. Physical activity is a feasible and acceptable community-identified strategy to promote psychosocial wellbeing among Rohingya refugees. Resources for physical activity programmes are extremely limited despite the identified social, mental and physical health benefits. Key implications for practice Physical activity was identified as a psychosocial strategy by Rohingya refugees living in Cox’s Bazar, Bangladesh, which can help to relieve tension, which is a local idiom of distress. Resources (such as space and equipment) to support community-led physical activity initiatives are limited, despite support from community leadership. Access to physical activity is limited for women, due to security fears and cultural attitudes, as well as for people with disabilities and older people, due to overcrowding and lack of accessibility planning.

Community engagement in global health education supports equity and advances local priorities: an eight year Ecuador-Canada partnership

Global health education initiatives inconsistently balance trainee growth and benefits to host communities. This report describes a global health elective for medical trainees that focuses on community engagement and participatory research to provide mutually beneficial outcomes for the communities and trainees. An eight-year university-community partnership, the Chilcapamba to Montreal Global Health Elective is a two-month shared decision-making research and clinical observership experience in rural Ecuador for medical trainees at McGill University, Canada. Research topics are set by matching community-identified priorities with skillsets and interests of trainees, taking into consideration local potential impact. Community outcomes included development of a Community Health Worker program, new collaborations with local organizations, community identification of health priorities, and generation of health improvement recommendations. Collaborative academic outputs included multiple bursary awards, conference presentations and published manuscripts. This medical global health elective engages communities using participatory research to prioritise socially responsible and locally beneficial outcomes.

End-of-life conversations and care: an asset-based model for community engagement

BackgroundPublic awareness work regarding palliative and end-of-life care is increasingly promoted within national strategies for palliative care. Different approaches to undertaking this work are being used, often based upon broader...

A Community Engagement Process Identifies Environmental Priorities to Prevent Early Childhood Obesity: The Children’s Healthy Living (CHL) Program for Remote Underserved Populations in the US Affiliated Pacific Islands, Hawaii and Alaska

Underserved minority populations in the US Affiliated Pacific Islands (USAPI), Hawaii, and Alaska display disproportionate rates of childhood obesity. The region’s unique circumstance should be taken into account when designing obesity prevention interventions. The purpose of this paper is to (a), describe the community engagement process (CEP) used by the Children’s Healthy Living (CHL) Program for remote underserved minority populations in the USAPI, Hawaii, and Alaska (b) report community-identified priorities for an environmental intervention addressing early childhood (ages 2–8 years) obesity, and (c) share lessons learned in the CEP. Four communities in each of five CHL jurisdictions (Alaska, American Samoa, Commonwealth of the Northern Mariana Islands, Guam, Hawai‘i) were selected to participate in the community-randomized matched-pair trial. Over 900 community members including parents, teachers, and community leaders participated in the CEP over a 14 month period. The CEP was used to identify environmental intervention priorities to address six behavioral outcomes: increasing fruit/vegetable consumption, water intake, physical activity and sleep; and decreasing screen time and intake of sugar sweetened beverages. Community members were engaged through Local Advisory Committees, key informant interviews and participatory community meetings. Community-identified priorities centered on policy development; role modeling; enhancing access to healthy food, clean water, and physical activity venues; and healthy living education. Through the CEP, CHL identified culturally appropriate priorities for intervention that were also consistent with the literature on effective obesity prevention practices. Results of the CEP will guide the CHL intervention design and implementation. The CHL CEP may serve as a model for other underserved minority island populations.

Community-Based Approaches to Reduce Toxins in Housing: Lessons Learned From Working with Diverse Communities

Abstract This article will review lessons learned from a community-based participatory research project with Latino and Somali residents in Portland, Oregon. The aim of the Healthy Futures Collaborative (HFC) project was to reduce in-home environmental health hazards associated with childhood respiratory illness and asthma through a process that strengthened social support and civic engagement. Using a community-based approach, the HFC trained community residents as community scientists to ensure local leadership and participation. Results suggest an increase in Somali and Latino residents' knowledge of environmental stressors and changes in behavior that may improve indoor environmental quality. Especially when working with historically marginalized communities, a model that acknowledges power differentials and responds to community-identified priorities is a powerful model for addressing environmental injustices. For example, the project was able to address both behavioral and structural components of h...

Charting the Statistical Distinctiveness of Edmonton’s Aboriginal Community

According to the Your City, Your Voice report, in 2003 the City of Edmonton, in partnership with the Edmonton Aboriginal Urban Affairs Committee (EAUAC), began discussions about the role the City could play in enhancing the lives of Aboriginal people in Edmonton. In 2004, the City of Edmonton, acting upon recommendations of EAUAC and senior staff, established the Edmonton Urban Aboriginal Accord Initiative. The Initiative is supported by the federal and provincial governments and other partners. Its primary objectives are to: •� improve the relationship between the City of Edmonton and Aboriginal people living in Edmonton; •� explore interest in the development of a principle-based agreement—an “Accord”— establishing a renewed relationship based on trust and mutual respect between the City of Edmonton and First Nations, Metis, Inuit, and Non-Status people living in Edmonton; hear directly from Aboriginal people about their perspectives, concerns, and priorities and share this information with willing resource holders prepared to work with Urban Aboriginal people and others on community-identified priorities; and •� support an inclusive process for the Aboriginal communities’ and partners’ action on community identified priorities;