Health Equity Research Network on Community-Driven Research Approaches
GENERAL OVERVIEW
There are two (2) funding opportunities through this unique award mechanism; an individual may apply for only one of these opportunities:
- Health Equity Research Network (HERN) on Community-Driven Research Approaches – Partner Hub
Required pre-proposals due by Tuesday, March 26, 2024
The key outcome of this HERN is the establishment of new models for community-driven research that can be scaled and used as a foundation for shifting norms, paradigms and practices within all domains of health research. Each Partner Hub must have two research projects and be represented by a community-based organization and an academic institution. The collaborations between and among the Partner Hubs build momentum around both systems change and knowledge of a particular issue, making it an ideal mechanism to meet the interrelated objectives.
- Health Equity Research Network on Community-Driven Research Approaches – Community Engagement Resource Center
Required pre-proposals due by Thursday, March 28, 2024
The Community Engagement Resource Center (CERC) will, under leadership of the Director, incorporate a multidisciplinary approach to provide capacity building, training, evaluation, and the management of a Community of Practice for the full Network. The CERC will facilitate engagement across the Partner Hubs and service as a coordinating center, facilitating capacity building, study optimization, communication, evaluation, and a Community of Practice.
Health Equity Research Networks (HERN) are part of the AHA’s multi-pronged approach to advance cardiovascular health for all, including identifying and removing barriers to health care access and quality. These networks are designed to aggressively address adverse social determinants of health while working to improve the health of communities who are most impacted. While past HERN models have required Partner Hubs (traditionally called Centers) to apply as a collective, this project will allow Partner Hubs to apply separately to allow for more topical and geographic diversity across the Network. HERNs typically have one Coordinating Center that coordinates work and communication across the projects. In this model, the Community Engagement Resource Center will serve as the coordinating center, facilitating capacity building, study optimization, communication, evaluation, and a Community of Practice. Originally defined by Jean Lave and Etienne Wenger, “Communities of Practice are groups of people who share a concern or a passion for something they do and learn how to do it better as they interact regularly” (Wenger-Trayner, et al., Communities of Practice within and across Organizations: A Guidebook, 2023). While these informal learning groups may vary in structure and purpose and though the concept has evolved over time (Li, et al., Implementation Science, 4:11, 2009), some common elements exist. The group commits to a specific domain to focus on, builds relationships to work together and share information as a community, and develops a sense of ownership over this area of work, learning together from the perspective of practitioners to improve their specific area of practice through the development of shared resources (Wenger-Trayner, et al., Communities of Practice within and across Organizations: A Guidebook, 2023). The CERC will facilitate this type of engagement across the Partner Hubs. The collaborations between and among the Partner Hubs build momentum around both systems change and knowledge of a particular issue, making it an ideal mechanism to meet our interrelated objectives.
The CERC Director(s) will work closely with the Partner Hub Co-Directors to facilitate activities across the Network, including end-of-network deliverables.
Purpose
To advance health and well-being for everyone, everywhere, address the root causes of health disparities, and meaningfully engage people and communities most affected, a paradigm shift is needed. That shift requires moving beyond platitudes and transactional “box-checking” approaches to community engagement. To understand and disseminate improved practices, research is needed on effective approaches for authentic shared decision-making, competency building, asset-based engagement, and value reciprocity. The American Heart Association is committed to health equity and advancing research that aggressively addresses social determinants of health that perpetuate disparities. The Robert Wood Johnson Foundation (RWJF) is committed to improving health and health equity in the United States. In partnership with others, RWJF is working to develop a Culture of Health rooted in equity that provides every individual with a fair and just opportunity to thrive, no matter who they are, where they live, or how much money they have. Therefore, AHA and RWJF are co-funding the Health Equity Research Network (HERN) on Community-Driven Research Approaches. This unique funding opportunity is designed to strengthen infrastructure to support community-driven health organizations, leading to improvements in upstream health disparities and ultimately longer, healthier lives. Establishment of the HERN on Community-Driven Research Approaches can help facilitate the needed shift in how community-driven research is currently conducted. In support of that objective and the goal of fair and just opportunities for improved health for all, this HERN has two primary aims:
- Build a critical mass of knowledge and momentum around equity-focused, community-driven methodological approaches and practices to transform how health-related knowledge is created, validated, and used.
- Advance research on mitigating the effects of structural racism and other intersecting systems that perpetuate health disparities through funding and capacity support.
The key outcome of this HERN is the establishment of new models for community-driven research that can be scaled and used as a foundation for shifting norms, paradigms and practices within all domains of health research.
Challenges to Community-Driven Research
Engaging community members in biomedical research presents a complex set of challenges. One of the foremost issues is establishing trust and overcoming historical mistrust, particularly in marginalized communities, which stems from past ethical breaches and exploitation in research (Trickett, et al., American Journal of Public Health, 101:1410-1419, 2011 ). Communities have often had research done on them rather than with them. Ensuring inclusivity and diversity in participant recruitment is another hurdle, as underrepresentation can lead to biased findings and limited generalizability (Yancey et al., Annual Review of Public Health 27:1-28, 2006). Researchers must also navigate language and cultural barriers to effectively communicate the purpose and potential benefits of their studies. Ethical considerations, such as obtaining informed consent and protecting sensitive health information, are vital but can be challenging to implement in culturally appropriate ways (Beach, et al., The Role and Relationship of Cultural Competence and Patient Centeredness in Health Care Quality, The Commonwealth Fund, 2006 ). These challenges emphasize the need for proactive, community-driven approaches to research engagement and the development of long-term relationships with community partners to foster collaboration and address these issues effectively (Israel et al., Critical Issues in Developing and Following CBPR Principles in Community-Based Participatory Research for Health: Advancing Social and Health Equity, pp. 31-46, 2018).
Optimizing Community-Driven Research
Community engagement can be defined as “collaborative processes between organizations/institutions and communities impacted by their policies, programs, or practices to influence decisions and actions through the mutually beneficial and bidirectional exchange of resources, expertise, and information” (Health Equity Solutions, 2023, Transformational Community Engagement to Advance Health Equity (rwjf.org)). Meaningful community engagement must consider both power structures and impact, moving from a transactional approach to engaging the community to a transformational approach that is community-driven.
Community-driven research is essential to address the specific health contexts and priorities of marginalized populations, ensure that research aligns with the real needs of communities, and ultimately, advance health equity. Community members are uniquely positioned to share their lived experiences of health and healthcare challenges, which – if genuinely incorporated – has the potential to transform how health-related knowledge is created, validated and utilized in the development of more relevant and effective interventions (Cargo & Mercer, Annual Review of Public Health, 29: 325-350, 2008).
Engaging community-based organizations (CBOs) in research requires a thoughtful and collaborative approach to ensure mutual benefit and meaningful contributions. Best practices include establishing clear communication channels and fostering relationships built on trust and respect (Viswanathan et al., AHRQ Publication 04-E022-2, 2004). It is essential to involve CBOs early in the research process, from project design to implementation, to ensure their expertise and perspective are integrated (Cargo & Mercer, 2008). Research organizations skilled in capacity-building should offer that expertise to support CBOs and other researchers in need of these skills (Rosenthal, et al., Progress in Community Health Partnership, 8(3):365-374, 2014). Developing a shared research agenda, with goals aligned with the community's needs and priorities, is crucial for sustained engagement (Jones & Wells, JAMA, 297(4), 407-410, 2007). Collaboration should also involve equitable resource allocation, fair compensation, and recognition for the CBO's contributions (Viswanathan et al., 2004). Regularly evaluating and adjusting the partnership based on feedback and lessons learned is integral to the success of these collaborations (Cargo & Mercer, 2008). By adhering to these best practices, research can become more community-driven, responsive, and impactful.
Anticipated Outcomes
Oversight Advisory Committee
To facilitate success of this HERN, an Oversight Advisory Committee (OAC) that includes members from academia and communities will be established. It will include volunteers who are subject matter experts in the focus areas within the Network and will also include representation from diverse groups historically excluded from science.
Interim Assessment
Awardees must report progress on a minimum annual (once per year) basis. Progress may take the form of a required written report in addition to video conferencing, phone calls, and/or face-to- face visits. Reporting will be focused on achievement of stated milestones as indicated in the project timeline. The OAC reserves the right to request additional updates, site visits, or reporting.
Relevant AHA Policies
Public Access: The AHA’s public access policy requires that all journal articles resulting from AHA funding be made freely available in PubMed Central (PMC) and attributed to a specific AHA award within 12 months of publication. It is the responsibility of the awardee to ensure journal articles are deposited into PMC.
Open Data: Any factual data that is needed for independent verification of research results must be made freely and publicly available in an AHA-approved repository as soon as possible, and no later than the time of an associated publication or the end of the award period (and any no-cost extension), whichever comes first. For more information on the above policies, see AHA's Open Science Policy webpage.
Preregistration: AHA requires preregistration for funded clinical trials and encourages preregistration for any studies that make an inferential claim from a sampled group or population, as well as studies that are reporting and testing hypotheses. After a project is completed, protocols and preregistration analysis plans can be used in conjunction with the final study and analysis by researchers seeking to replicate, reproduce, and build upon findings. See AHA’s preregistration information.
Other: The projects described can have no scientific or budgetary overlap with other funded work. Any inventions, intellectual property, and patents resulting from this funding are governed by the AHA Patent, Intellectual Property and Technology Transfer Policy. The applicant/awardee and institution are responsible for compliance with all AHA research award policies and guidelines for the duration of any awards they may receive. Visit the Research Programs Awards Policies page for more information on this topic: AHA Policies Governing All Research Awards.
Refer to the AHA Award Policies for information on all AHA award policies.
Proposal Submission
Proposals must be submitted using ProposalCentral, AHA’s online submission portal. For explicit submission Instructions, please see the AHA Application Instructions.
Other Features of this AHA Research Opportunity
The AHA believes diversity and inclusion is an essential component to driving its mission and strongly encourages submissions by women, underrepresented racial and ethnic groups in the sciences, military veterans, people with disabilities, members of the LGBTQ+ community, and those who have experienced varied and non-traditional career trajectories.
Notice of Potential Co-funder
In addition to the Robert Wood Johnson Foundation, the AHA anticipates other possible co-funders for this research initiative, including potentially from industry. Representatives from these co-funders may listen to the discussion about proposals, but they will not participate in the discussion and will not score proposals. Additionally, there may be an opportunity for a co-funder representative to participate as a member of the Oversight Advisory Committee. Regardless of level of participation, all AHA policies and procedures regarding non-disclosure and conflicts of interest will be scrupulously followed.
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