Table of Contents
- Introduction
- Context & Approach
- Action Areas
- Action Area One: Situate research to be accountable to communities
- Action Area Two: Prioritize the social impact of research findings
- Action Area Three: Embed principles of justice and liberation in health equity …
- Action Area Four: Work in coordination to achieve collective action
- Action Area Five: Bolster the infrastructure needed to support an equitable and…
Introduction
What would it take to truly shift the health science knowledge system so that communities historically excluded from defining “evidence” are centered as co-creators of knowledge and health justice?
Transforming the systems that determine what research is valued, funded, published, rewarded, and put into practice - known as the Health Science Knowledge System (HSKS) - requires reimagining what constitutes knowledge, how it is produced, and how it is shared. These determinations are shaped not by any single individual or actor, but by a complex ecosystem of institutions and players whose policies, practices, incentives, and norms collectively define the HSKS. If we want an HSKS that is connected to and serves communities, we must change the institutions that sustain it, or build new infrastructure that uplifts the varied experiences, cultures, knowledge, expertise, and power of communities.
This Action Agenda is an invitation to collectively do just that – transform the HSKS. It expands on decades of work led by communities, researchers, advocates, policymakers, funders, journal editors, academics, and many other community and institutional leaders who have pushed boundaries to meaningfully advance health justice. It focuses intentionally on changing systems. It offers an array (or menu) of possible solutions for the institutions, sectors, and players that shape the HSKS, recognizing that lasting transformation requires collaborative action across the ecosystem. While this Action Agenda does not capture every sector with a role to play (e.g., government agencies), anyone who sees themselves in this work, can (and should) contribute to this transformation. The actions presented here are intended to catalyze collaboration, strengthen (or reform) the infrastructure needed for change, and mobilize decision-makers to use their influence and power to create an HSKS that recognizes, reflects, values, and serves communities.
A transformed health science knowledge system is possible. Now, our collective task is to put these actions into practice!
Context & Approach
Why was this Action Agenda created?
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Knowledge, what we know and believe to be true, is derived from a variety of sources – education, experience, instinct or intuition, and experimentation. Historically, the scientific community has placed greater value on experimental knowledge, elevating not only the information it provides, but also the methods by which it is obtained. This thinking has created a scientific knowledge system that is insulated and limited. In recent years, deep politicization of science combined with a public reckoning with racism in the United States (and in science) has spurred a reevaluation of what constitutes knowledge. Despite growing attention to research focused on racial and Indigenous equity, structural racism and settler colonialism are embedded in how the current research ecosystem operates – from how research is done, to who gets tenure and how it is incentivized and achieved, from who and what research is funded, to the type of research that is published and cited.
In recognition of the importance of a more holistic basis of knowledge, constructed from multiple sources and approaches, the Robert Wood Johnson Foundation (RWJF) is working to transform the “Health Science Knowledge System” to shift the paradigm around how knowledge is created, valued, and distributed. The aim of this effort is not to eliminate or exclude the scientific method, but to expand on it, recognizing that it is one of many valuable ways of knowing and generating knowledge for a broader understanding of what is needed to advance racial and Indigenous health equity. Scientific knowledge has been – and continues to be – incredibly valuable for understanding health and wellbeing in communities. But other forms of knowledge generation, including lived experience, community knowledge, and Indigenous Ways of Knowing, are equally important for understanding the conditions that shape health and identifying solutions to improve it. These forms of knowledge should be equally valued and used to inform action to advance health equity. For instance, quantitative research is often privileged as the gold standard for determining what constitutes rigorous science, but we recognize that this is flawed. Communities should not have to wait for a scientific study to validate what they already know through lived experience before their experiences and priorities elicit action.
What is the Health Science Knowledge System?
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The Health Science Knowledge System (HSKS) is defined as a system of knowledge generation, currently heavily influenced by institutional gatekeepers or decision-makers of scientific knowledge—academic and other research institutions, journals, scientific review boards, research funders, and other entities (e.g., the government)—that make decisions about what constitutes scientific knowledge, what we produce, collect, and share. For this reason, this Action Agenda specifically focuses on decision-makers in positions of power or influence within the current HSKS, who we can collectively hold accountable to make changes in the processes, policies, and procedures of their institutions to support a more holistic HSKS (e.g., academic administrators, journal editors, and research funders).
A note on the role of non-profit organizations
While they do not operate in the same capacity as other decision-makers, non-profit organizations play a vital role in transforming the HSKS because they often act as the bridge between communities and research institutions, including academia, funders, and journals. Often rooted in the communities they serve, non-profit organizations are uniquely positioned to translate community priorities to institutional partners while also helping communities navigate and engage in the research process. In doing so, they can serve as trusted connectors and holders of accountability, ensuring that research remains responsive to community priorities and that institutions are accountable to the people they aim to serve. While not traditionally categorized as gatekeepers within the HSKS, non-profits do wield power and have an important role to play in knowledge generation, translation, and implementation, especially community-based organizations that are grounded in their local communities, for example. This Action Agenda encourages non-profits to recognize and embrace this power by using their position to push boundaries, advocate for more equitable partnerships, and help build the capacity of community members to meaningfully participate in and lead research.
We recognize that non-profits are diverse. They vary in size (from small community-based organizations to large, national think tanks), mission, and resources, and their experience engaging in research ranges from extensive to limited. Some have dedicated research infrastructure and longstanding partnerships, while others are just beginning to build this capacity. The recommendations in this Action Agenda are intended primarily for non-profits that are engaged in research partnerships with other institutions. Consequently, not every priority action can be accommodated by all non-profits.
What is the Ways of Knowing Initiative?
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The Ways of Knowing initiative, co-developed by two Robert Wood Johnson Foundation programs, Evidence for Action (E4A) and Partners for Advancing Health Equity (P4HE)—in close collaboration with expert co-organizers—is an ongoing effort to leverage collective wisdom and action to transform the HSKS. This transformation aims to uplift the knowledge, expertise, and power of people and communities who have been continuously oppressed and marginalized, and advance health equity research along a continuum towards health justice.
The Ways of Knowing initiative is also an effort to redefine rigor in the health sciences. The ideal would be to move from a narrow methodological hierarchy that heavily favors causal inference designs to a broader definition that accounts for both how the research is conducted and whether the research has an impact (impactful research in this broader definition would value tangible benefits to communities, not just policy reform).
What is the Ways of Knowing Ecosystem?
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In this Action Agenda, beyond the HSKS decision-makers, the Ways of Knowing ecosystem represents the players within the HSKS who share values related to advancing health equity and justice. Within this ecosystem are health equity scholars, grassroots researchers, non-profit organizations, members of communities most impacted by injustices, and others with a vested interest in using research as a tool for advancing health equity. These players have diverse lived experiences and represent diversity across positions of power and privilege within the HSKS and beyond. As our ecosystem continues to expand and welcomes new voices and perspectives, we anticipate that this work, including the shared language we use to describe it, will evolve to better honor the dignity and representation of our growing collective.
How was the Action Agenda created?
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E4A and P4HE collaborated with hundreds of thought-leaders, including health equity researchers, community members and organizations, policy advocates, journal editors, and academic and philanthropic partners to envision how to transform the HSKS. In 2024, we held gatherings, workshops, and discussions with people who have a long-standing commitment to and vested interest in advancing Indigenous and racial health justice. We created the time, space, and conditions for people to come together and collectively reimagine the principles and practices for anti-racist and anti-colonial health equity research, to dream of what a transformed HSKS could look like. This collective reimagining of the system, in community with one another, was in stark contrast to the homogenous way in which the system was created.
Subsequently, between 2025-2026, we engaged in conversations with dozens of decision-makers and leaders (e.g., academic administrators, funders, journal editors, and non-profit leaders) across the Ways of Knowing ecosystem to understand the practical steps needed to act on this shared vision. We explored how the aspirational vision currently plays out in their institutions and organizations in practical, tangible ways, and what would need to change to make that vision a reality.
How should this Action Agenda be used and what are the next steps?
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This Action Agenda should be used for action and mobilization! It is for anyone who sees themselves in this work, including health equity researchers, advocates, and changemakers. It is especially intended for decision-makers within the HSKS who have the power to shape policies, practices, and norms and are eager to drive and advocate for change. Whether you are a dean at a school of public health, an editor-in-chief of a health journal, a president at a research philanthropy, or a leader of a nonprofit, this Action Agenda invites you to use your position and influence to lead transformation.
This Action Agenda embodies the belief that community-based lived experiences, wisdom, and approaches are valid and valuable and should be supported and celebrated. The descriptions for each action area represent the aspirational state of an equitable, accountable, and impactful HSKS. The priority actions articulate steps that need to be taken by sectors that currently hold power in the HSKS to advance these aspirations and make real progress towards racial and Indigenous health justice. This Action Agenda is unique in that its action areas and priority actions were informed by the people who are doing the work - community members, racial and Indigenous equity researchers, advocates, etc. – and vetted by representatives from the sectors defined by the HSKS – academic institutions, funders, journals, and non-profits – ensuring they are grounded in reality and actionable within each sector. Not every action will be feasible or appropriate for every organization or institution. Rather, the Action Agenda offers a set of priorities that actors can implement based on their role, capacity, and community priorities while continuing to strengthen their ability to advance community-driven research and hold the broader HSKS accountable. Furthermore, we appreciate that some of the priority actions in this agenda may feel impossible to implement based on changing political climates. We invite you to implement actions that are feasible given the context you and your organization/institution are in. Even in moments of great turmoil, we can aspire to new futures, give space to dream, and imagine a more just and joyful HSKS.
We encourage you to further shape and co-own this agenda, and to take these priority actions and put them into practice: change policies, practices, and norms within your institution, and collaborate across sectors to make a transformed HSKS a reality. Collectively, in community, we have the power to influence what a new HSKS will look like!
A note on next steps
While this Action Agenda serves as an aspirational vision of a transformed HSKS, it is not intended as an implementation toolkit. However, to support implementation of these priority actions, a repository of resources, including examples, models, and guidance on how institutions and organizations have applied several of the priority actions, will be catalogued in the Partners for Advancing Health Equity Resource Library.
E4A and P4HE are co-sponsoring a supplemental issue of the American Journal of Public Health (AJPH) dedicated to the Ways of Knowing initiative. This supplemental issue is intended as a call to action to those involved in health equity research. The supplement will feature concrete steps and practical examples for creating a more inclusive and holistic HSKS that values experiential, cultural, and community Ways of Knowing, and shifts understanding of knowledge creation. The supplement is expected to be released in 2027.
Action Areas and Priority Actions
Transforming the HSKS requires sectors to work together rather than in silos. Each sector has a role to play in moving the HSKS forward, sometimes by pulling a specific lever, and sometimes by acting in concert with others. In some cases, change may happen sequentially, like a domino effect. In other cases, change requires simultaneous action across sectors. Below, within each action area, we highlight an “example in action” of how priority actions across sectors can reinforce one another and collectively drive meaningful change.
Action Area One: Situate research to be accountable to communities
Research practices, funding, and sharing of findings are ethically accountable to communities, are led or co-led by community members, and build on community-centered knowledge, wisdom, beliefs, and lived experience, rather than validating or verifying them. The leadership and knowledge of community-based research are uplifted and embraced as part of the larger action research ecosystem, situated equitably alongside and in collaboration with academic and industry research.
Action Area Two: Prioritize the social impact of research findings
The priority of health equity research is to center action and advance social change. Research metrics and incentives are tied to how the work advances racial and Indigenous health justice and helps shape policy and practice, shifting the focus from individual achievement or institutional net profit to collective social impact. Needs and solutions identified by communities serve as the foundation for community-research collaboration that draws from multiple knowledge sources to increase both breadth and depth of action research impacts.
Action Area Three: Embed principles of justice and liberation in health equity research culture
Researchers, funders, journal editors, academics, and community partners are equipped through training, mentorship, and institutional support to apply situationally appropriate anti-racist and anti-colonial principles in the design, implementation, and sharing of research.
Action Area Four: Work in coordination to achieve collective action
Funders, journal editors, academic institutions, and community partners (i.e., HSKS decision-makers and players) work in tandem, rather than within competing systems, through coordinated networks and coalitions, and foster a culture of collaboration among people and organizations working towards a shared goal. This effort begins with like-minded organizations committed to working together to change how the HSKS operates and how its actors engage with one another.
Action Area Five: Bolster the infrastructure needed to support an equitable and durable health equity research ecosystem
Researchers, funders, journal editors, academic institutions, and community partners collaborate in coalition to bolster sustainable and long-term infrastructure within the HSKS, investing resources to support the system and its actors, creating learning infrastructure, and establishing effective communication systems. This strengthening establishes and actualizes the value of health equity research, provides protections and support for those doing that work, and enables the research ecosystem to operate more cohesively and equitably across emergent challenges.
Action Area One: Situate research to be accountable to communities
Research practices, funding, and sharing of findings are ethically accountable to communities, are led or co-led by community members, and build on community-centered knowledge, wisdom, beliefs, and lived experience, rather than validating or verifying them. The leadership and knowledge of community-based research are uplifted and embraced as part of the larger action research ecosystem, situated equitably alongside and in collaboration with academic and industry research.
Priority Actions
An Example in Action
To ensure the HSKS is operating in service to community betterment, Funders can co-develop funding opportunities with community input and leadership (from design to review); Academia can expand avenues (resources, positions, etc.) to support, connect, and share work led by community and grassroots researchers (in addition to support for researchers housed within the academy), and leverage institutional positionality to achieve greater impact; Journals can create special issues to help build internal and external capacity for publishing more community-generated knowledge; and Non-profits can establish community feedback mechanisms that hold institutional partners and non-profit governance structures accountable to community priorities throughout and after research projects, and ensure that institutions are accountable for results that are desired by the community.
Funders
- Co-develop funding opportunities with community input and leadership (from design to review)
- Diversify boards of directors to include people with relevant lived experience
- Build relationships among foundation staff and community groups by employing foundation staff from geographically and contextually relevant communities
- Promote authentic power-sharing within research teams throughout the research process by directly funding community organizations to lead or co-lead research projects
- Require an acknowledgment of the research team’s perspective and positionality in the application process
- Provide flexible and long-term funding
Academia
- Revise tenure and promotion criteria, practices, and processes to demonstrate and actualize the value of community partnerships and real-world impact over publication and citation metrics, ensuring consistent standards within academic departments
- Create a parallel community Institutional Review Board (IRB) to guide and review the relevance of research to community members
- Expand avenues (resources, positions, etc.) to support, connect, and share work led by community and grassroots researchers (in addition to support for researchers housed within the academy), and leverage institutional positionality to achieve greater impact
Journals
- Create special issues to help build internal and external capacity for publishing more community-generated knowledge
- Diversify editorial boards and peer reviewers to include community members and practitioners
- Consider using a co-editor model to offset editorial burdens and diversify leadership/perspectives
- Prioritize open-access by adopting strategies such as: transformative agreements (where libraries pay for both reading and publishing rights to remove fees for authors and readers), partnering with external funders to subsidize open access fees, creating nonprofit journals that operate as public goods with donor support, and implementing sliding-scale open access fees, which recognize research as a public good
- Publish research that includes an acknowledgment of the research team’s perspectives and positionality
Non-profits
- Establish organizational governance and decision-making structures in which directly impacted community members share decision-making authority (e.g., as board members or part of a community accountability council to monitor institutional commitments, partnership agreements, dissemination plans, and implementation outcomes)
- Create opportunities for directly impacted community members to define research priorities, interpret findings, and shape recommendations as equal partners throughout the research process (e.g., by serving as Co-PIs on research grants or on a community institutional review board, based on their desired level of involvement)
- Create community-centered engagement practices for shared learning, data interpretation, knowledge creation, and decision-making, such as data dinners, scenario workshops, community writing groups, or public interpretation sessions
- Establish community feedback mechanisms that hold institutional partners and non-profit governance structures accountable to community priorities throughout and after research projects, and ensure that institutions are accountable for results that are desired by the community
- Invest in building the long-term organizational capacity of non-profits, including the contracting, budgeting, auditing, and negotiating expertise necessary to secure equitable contracts or grant agreements to retain greater control over the research process
Action Area Two: Prioritize the social impact of research findings
The priority of health equity research is to center action and advance social change. Research metrics and incentives are tied to how the work advances racial and Indigenous health justice and helps shape policy and practice, shifting the focus from individual achievement or institutional net profit to collective social impact. Needs and solutions identified by communities serve as the foundation for community-research collaboration that draws from multiple knowledge sources to increase both breadth and depth of action research impacts.
Priority Actions
Example in Action
To elevate the value of community knowledge and ensure it is translated into action, Academia can redefine tenure and promotion criteria to recognize research quality, research dissemination and publications outside traditional academic outlets, social impact, and relationship-building as demonstrations of research productivity over publication quantity or secured funding; Non-profits can co-develop dissemination products (i.e., lay summaries, policy briefs, fact sheets, newspaper commentaries, accurate multilingual materials, community reports) that support community desired framing, action, decision-making, advocacy, and problem-solving; Funders can allow grantees to share findings in their preferred way (e.g., storytelling, videos, a social media campaign); and Journals can publish editorials, commentaries, articles, field notes, and special issues emphasizing anti-colonial, anti-racist, and intersectional frameworks and equitable research practices.
Funders
- Fund research methods and approaches that align with the research question(s) and the social/cultural norms that are appropriate in the community where the research is being conducted
- Support capacity building that addresses needs identified by non-profits
- Allow grantees to share findings in their preferred way (storytelling, videos, a social media campaign, etc.)
- Prioritize and support high-impact dissemination activities (e.g., advocacy training, media prep, messaging campaigns, and other communications support, convenings, etc.)
Academia
- Reward and provide faculty with resources for mentorship of junior and mid-career scholars
- Redefine tenure and promotion criteria to recognize research quality, research dissemination, and publications outside traditional academic outlets, social impact, and relationship-building as demonstrations of research productivity over publication quantity or secured funding
- Develop documentation guidelines and metrics to reflect these activities
Journals
- Publish editorials, commentaries, articles, field notes, and special issues emphasizing anti-colonial, anti-racist, and intersectional frameworks and equitable research practices
- Update instructions for authors to highlight openness to diverse methods and perspectives
- Present at conferences (AcademyHealth, IAPHS, APHA) or local community meetings, etc., to normalize health equity-centered publishing practices (change the narrative)
Non-profits
- Co-develop dissemination products (i.e., lay summaries, policy briefs, fact sheets, newspaper commentaries, accurate multilingual materials, community reports) that support community desired framing, action, decision-making, advocacy, and problem-solving
- Document and elevate community stories, lived experiences, and community-defined knowledge alongside traditional research findings, and advocate for institutional and government policies that recognize these forms of knowledge as equally valuable sources of evidence
Action Area Three: Embed principles of justice and liberation in health equity research culture
Researchers, funders, journal editors, academics, and community partners are equipped through training, mentorship, and institutional support to apply situationally appropriate anti-racist and anti-colonial principles in the design, implementation, and sharing of research.
Priority Actions
Example in action
To increase the capacity of the Ways of Knowing ecosystem to embed principles of justice and liberation in health equity research culture, Funders can provide capacity-building support as identified by non-profits throughout the grant period; Journals can develop and support mentorship and health equity training programs; Academia can train senior faculty to apply anti-racist and anti-colonial principles in their research, teaching, and service, while ensuring students develop the same competencies through required coursework; and Non-profits can develop internal research capacity within non-profits and build a pipeline of community leaders by training residents as future community researchers, data stewards, community evaluators, nonprofit leaders, and community advocates.
Funders
- Reimagine and adopt flexible reporting and evaluation requirements that respect community-defined measures of success
- Provide capacity-building support as identified by non-profits throughout the grant period
- Define and continuously reflect on what equity and justice mean for your organization to guide processes and requirements
- Commit to analyzing who is applying, who is being funded, and where inequities exist in the funding allocation process
- Increase transparency in decision-making processes by providing feedback to applicants and grantees
Academia
- Redesign faculty recruitment and onboarding processes to attract, support, and retain a more diverse faculty body
- Train senior faculty to apply anti-racist and anti-colonial principles in their research, teaching, and service, while ensuring students develop the same competencies through required coursework
- Review existing academic program requirements to identify where these competencies are addressed, and, if missing, develop and embed them into the curriculum
- Equitably compensate community research partners
Journals
- Develop and support mentorship and health equity training programs, including commissioning writings and mentorship opportunities for graduate students, early-career scholars of color, and community researchers, offering paid editorial residencies, training reviewers to identify bias, and compensating community members to participate in manuscript review
- Identify and address potential biases in author representation by tracking demographics (authorship, rejection rates)
- Implement public portals to track and annotate the ways racism shows up in the peer review process and train reviewers to identify bias
- Hire a Health Equity Associate Editor to establish anti-racist/anti-colonial work standards and metrics within journal operations
Non-profits
- Establish written agreements and publishing expectations or procedures with research partners (e.g., require co-authorship, prior community review and approval, appropriate acknowledgments, and open access)
- Develop internal research capacity within non-profits and build a pipeline of community leaders by training residents as future community researchers, data stewards, community evaluators, nonprofit leaders, and community advocates
Action Area Four: Work in coordination to achieve collective action
Funders, journal editors, academic institutions, and community partners (i.e., HSKS decision-makers and players) work in tandem, rather than within competing systems, through coordinated networks and coalitions, and foster a culture of collaboration among people and organizations working towards a shared goal. This effort begins with like-minded organizations committed to working together to change how the HSKS operates and how its actors engage with one another.
Priority Actions
Example in action
To achieve collective action, Funders, Journals, Academia, and Non-profits, can invest in and commit to working in partnership with one another to build national and local coalitions to support and advance a liberated HSKS, engage in multi-sectoral convenings, and peer-learning networks to co-create shared values, norms, and practices, develop success metrics and accountability measures, grow trust, share (and shift) power, and scale innovations for long-term impact.
Funders
- Facilitate and fund networks of people and organizations interested in achieving a shared goal to promote collaboration over competition
- Funders pool resources across philanthropies to create greater collaboration and translate ideas into action
Academia
Incentivize and reward interdisciplinary and interdepartmental collaboration among faculty, staff, and administrators, and concretize effective practices into formal internal policies and processes.
Journals
- Engage with multi-disciplinary journal editors to share, formalize, and implement inclusive health equity and health justice research standards across the publishing enterprise
- Encourage diverse citation and theoretical sources, including community-based knowledge and research, grassroots and place-based experimentation, and emergent strategies across sectors
- Encourage or require publications to include directions for action that draw from research findings
Non-profits
- Build and sustain coalitions among established and emerging non-profits – ensuring meaningful decision-making authority and representation from smaller sub-populations – through peer learning networks, mentorship opportunities, resource sharing partnerships, capacity building opportunities, and collaborative research initiatives, to strengthen coordination, reduce duplication, and increase collective impact
- When working in coalition, engage in a shared strategic planning process to identify common priorities, agendas, and motivations for research and data activities, and establish the values that will guide collaborative decision-making and collective action
- Formalize equitable partnership roles with funders, academic institutions, and other decision-makers (e.g., co-principal investigator positions, fair and equitable compensation, and community-led dissemination plans) to build power and hold institutions accountable to community priorities
- Establish practices for coalition trust-building, conflict resolution, and relationship repair (e.g., facilitated dialogue, shared agreements, feedback processes, and restorative conversations) to strengthen collaboration among non-profits, navigate disagreement constructively, and sustain long-term collective action
- Establish community-based implementation and learning laboratories/innovation hubs that enable communities and research partners to test, evaluate, refine, and scale evidence-informed solutions in real-world settings, with clear implementation plans, outcome measures, and accountability processes that demonstrate how findings will contribute to sustainable community change
- Build and sustain coalitions among established and emerging non-profits – ensuring meaningful decision-making authority and representation from smaller sub-populations – through peer learning networks, mentorship opportunities, resource sharing partnerships, capacity building opportunities, and collaborative research initiatives, to strengthen coordination, reduce duplication, and increase collective impact
Action Area Five: Bolster the infrastructure needed to support an equitable and durable health equity research ecosystem
Researchers, funders, journal editors, academic institutions, and community partners collaborate in coalition to bolster sustainable and long-term infrastructure within the HSKS, investing resources to support the system and its actors, creating learning infrastructure, and establishing effective communication systems. This strengthening establishes and actualizes the value of health equity research, provides protections and support for those doing that work, and enables the research ecosystem to operate more cohesively and equitably across emergent challenges.
Priority Actions
Journals
- Acknowledge and offset the burden of peer reviewing and serving on editorial boards by compensating these roles
- Translate innovations into concretized author guidelines and push for adoption through national and international committees (e.g., ICMJE) and at the publisher level
Non-profits
- Establish community data stewardship and governance practices (e.g., data governance policies, community review processes, data-sharing agreements, and decision-making protocols) to strengthen community ownership of data and ensure information is collected, used, interpreted, and shared in ways that reflect community priorities
- Create community-owned data dashboards and shared measurement systems that allow residents, non-profits, funders, researchers, and policymakers to monitor progress toward community-defined outcomes in real time (monitoring and accountability infrastructure, to the extent possible, should be accessible and owned by the community)
- Reduce dependence on external institutions' (e.g., governmental and academic) research and data infrastructure by investing in internal or coalition-shared data sovereignty capacity (e.g., dedicated data/research staff, shared governance functions, data management systems and technical assistance partnerships)
- Establish standardized agreements, frameworks, or processes for data ownership, access, use, and dissemination when partnering with researchers, funders, and other institutions (e.g., standing data-sharing agreements or templates, memorandums of understanding or agreement, funding pass-through agreements, free, prior, and informed consent processes, and community approval processes) to promote transparency, accountability, and equitable use of community knowledge
- Establish community data stewardship and governance practices (e.g., data governance policies, community review processes, data-sharing agreements, and decision-making protocols) to strengthen community ownership of data and ensure information is collected, used, interpreted, and shared in ways that reflect community priorities
Example in action
To bolster or reform the HSKS infrastructure, Funders can start creating the conditions (i.e. funding, networks, infrastructure, etc.) to support an alternative health equity research enterprise; Academia can work with accrediting bodies to formalize curriculum requirements related to health justice research practices at scale; Journals can translate innovations into concretized author guidelines and push for adoption through national and international committees (e.g., ICMJE) and at the publisher level; and Non-profits can reduce dependence on external institutions' (e.g., governmental and academic) research and data infrastructure by investing in internal or coalition-shared data sovereignty capacity (e.g., dedicated data/research staff, shared governance functions, data management systems and technical assistance partnerships).
Funders
- Fund/provide backbone support for coordinated networks, coalition building
- Support or launch the infrastructure for a new journal run as a public good with no fees and no profit expectations
- Redesign funder applications to be more accessible, inclusive of communities, as opposed to rigid, nonrelational transactional processes
- Start creating the conditions (i.e. funding, networks, infrastructure, etc.) to support an alternative health equity research enterprise
- Provide technical support and training opportunities for needs across the field
Academia
- Situate senior leaders to serve as long-term champions of health equity principles and practices, with resources and dedicated staff to ensure it’s sustained and institutionalized, rather than a one-time effort
- Work with accrediting bodies to formalize curriculum requirements related to health justice research practices at scale