Session moderator Brian Rivers, professor and director of the Cancer Health Equity Institute at Morehouse School of Medicine, explained presentations in this session would discuss approaches to create complementary collaborations among the Agency for Healthcare Research and Quality (AHRQ), the Office of the Assistant Secretary for Planning and Evaluation (ASPE), the Patient-Centered Outcomes Research Institute (PCORI), and other agencies to improve health equity. He noted that AHRQ’s proposed strategic framework includes health equity as a high-priority component with desired outcomes that include reducing health disparities for AHRQ’s priority populations, engaging underrepresented communities in training and implementation activities, and improving equity and access to needed care.
THE ROLE OF DATA IN HEALTH EQUITY
Gary Puckrein, founding president and chief executive officer of the National Minority Quality Forum (NMQF), explained that most of his organization’s work centers on collecting health data and examining the intersection of policy and health outcomes. He explained that NMQF uses data to identify and address health inequity. He said limited access to health care data is a contributor to health inequity. He suggested AHRQ, ASPE, and PCORI could collaborate to democratize access to health care data as part of their efforts to address health inequity.
Puckrein said an important component of democratizing health care data is sharing data back with its creators so that they can manage their health appropriately. He noted that one access challenge is the sheer volume and complexity of health data, which creates difficulties for patient advocates seeking to access and use that data. This puts patient advocates at a disadvantage when they try to advocate for better health care and eliminate disparities. To address that challenge, his organization developed the patient advocacy learning community. This is an online geographic information system and data warehouse where his team is curating the data from 5 billion patient records and making it accessible to patient advocates in an easy-to-use format. The website also includes tools to analyze the data, with plans of augmenting them with artificial intelligence and other tools so that patient advocacy groups and community-based organizations can use the data to support their work. Puckrein closed by emphasizing health care is a data-driven system and everyone in the health care system needs to use data to get the best outcomes for patients.
STRENGTHENING THE PRIMARY CARE SYSTEM WHILE ADVANCING HEALTH EQUITY
Anne Gaglioti is associate professor of family medicine at Metro Health System and Case Western Reserve University’s Population Health Research
Institute and associate professor at Morehouse School of Medicine’s National Center for Primary Care (NCPC). She briefly described the framework that NCPC developed for applying a health equity lens to a learning health system approach for transforming health care organizations and communities. She said the foundational elements of the framework are to prioritize health equity, engage the community, target health disparities, act on the data, and learn and improve (Brooks et al., 2017).
Gaglioti also serves as co-director of the Southeast Regional Clinicians Network, an AHRQ practice-based research network (PBRN) of 203 federally qualified health centers serving over 4 million patients in eight southeastern U.S. states. She said PBRNs are well positioned to advance health equity because of the nature and structure of their operations, including their application of equity principles to their research. PBRNs engage patients, clinicians, and communities in their research. She explained PBRNs have an opportunity to measure the impact of programs and advance equity through their data, engagement, and dissemination infrastructure (Westfall et al., 2019).
Gaglioti offered suggestions for how AHRQ, ASPE, and PCORI might leverage Patient-Centered Outcomes Research Trust Fund (PCORTF) funding to advance health equity by supporting meaningful engagement with patients, clinicians, and communities. She noted these suggestions were informed by input from patient and stakeholder advisers. Her first suggestion was to support a research engagement infrastructure, given that engagement is foundational to equity. The Southeast Regional Clinician’s Network has a high-level engagement infrastructure, but it is challenging to sustain because it depends on project funding. PCORTF funding could provide a mechanism for sustaining a longitudinal engagement infrastructure that would span projects and support building and sustaining trust and skills. This engagement infrastructure should incorporate capacity building for patient and stakeholder advisers and researchers, she said. She suggested that AHRQ should consider developing a space in which different stakeholder groups, patients, community members, community-based organization leaders, and clinician advisers could collaborate and have opportunities for shared learning and peer support.
Gaglioti’s second suggestion was to prioritize and require equity impact measurement in comparative effectiveness research. She said applications for funding should ground their comparative effectiveness research and other implementation work in measuring disparities and evaluating the impact of the interventions on reducing disparities. She said this type of research should determine comparative effectiveness across different populations, and it should prioritize asking about comparative acceptability to different populations or the perceived sustainability or access to interventions for disproportionately impacted populations.
Her third suggestion was to build research and researcher capacity to
support community engagement relationships that bolster trustworthiness. She suggested that career development awards should include a required or suggested training activity related to patient and stakeholder engagement in research. She added that PCORI’s work around the science of engagement could inform and support that training. She also noted the importance of encouraging patient or community advisers with lived experience in the area of focus to serve as mentors on career development awards.
Gaglioti’s fourth suggestion was to support engagement through the greater allocation of time as a resource. She explained engagement bolsters the opportunity for projects to cultivate equity. However, engagement requires a great deal of time to plan the work; align priorities; reach meaningful impact; and conduct, interpret, and disseminate the work. She suggested that grant applications should consider the time investment needed for effective engagement in their timelines. She explained that a longer timeline for developing an application on strong foundations of trust can be helpful, as would a long project period that supports more time for engagement across the spectrum of research processes.
Her final suggestion was to build the pipeline of an equity-focused workforce through engagement. She said the Jackson Heart Study does that well. When funding or designing a funding opportunity announcement focused on health equity, she suggested funding opportunities focused on health equity should require pipeline infrastructure focused on empowering youth or learners who are members of the disproportionately impacted group of interest. The pipeline infrastructure could consist of a mentorship program, scholar program, or internship.
Gaglioti closed by offering suggestions about equity-centered engagement in research and implementation from community partners involved in a project to mitigate the impact of COVID-19 on disproportionately impacted populations:
- Academic, private, and government partners should adapt their approaches based on input from community members in order to align their work with the needs of disproportionately affected communities.
- It is crucial that partnerships with community-based organizations are equitable with respect to meaningful leadership, agency, power, and funding support.
- Effort should be directed to sustain and build on the trust and partnerships across sectors that have developed during the COVID-19 pandemic so as not to squander this hard-earned, valuable trust.
- Include community representatives in the project governing board and leadership when planning and executing implementation projects designed for disproportionately affected populations.
ADDRESSING HEALTH EQUITY THROUGH DISSEMINATION AND IMPLEMENTATION SCIENCE
Rachel Shelton is associate professor of sociomedical sciences at Columbia University’s Mailman School of Public Health and director of the implementation science initiative and co-director of the community engagement core resource at the Irving Institute for Clinical and Translational Research. She began by saying there is a well-documented, large gap between research and practice that has substantial implications for exacerbating social and health inequities. She noted that it can take 17 years for 14 percent of original research to impact patient care (Morris, 2011). Shelton opined this is in part because the research community often takes a passive approach to dissemination.
Shelton said the inconsistent uptake of COVID-19 vaccination in the United States has demonstrated evidence alone does not lead to widespread or equitable uptake or adoption. Research evidence is only one component to consider when planning uptake and implementation at scale. She said effective and equitable dissemination and implementation requires the following:
- considering how the evidence base matches or reflects the lived experiences of the populations and communities an intervention aims to help;
- the skill set and the capacity of the practitioners beyond the research setting; and
- the dynamic and complex systems at the policy, community, and health systems level (Brownson et al., 2009; Green et al., 2009).
Shelton explained dissemination and implementation science seeks to translate research and evidence into policy and practice with the goal of impacting population health equitably and at scale. It involves the scientific study of methods, strategies, and frameworks to better assess context and actively promote routine adoption, use, and sustainability of evidence-based interventions and practices in real-world clinical, community, and public health settings to improve the quality of care and health (Eccles and Mittman, 2006). She noted that there is a distinction between dissemination and implementation. Dissemination refers to how to deliver evidence and evidence-based programs to key stakeholders, leadership, and decision makers. Implementation refers to how to integrate and deliver evidence and evidence-based programs in diverse, real-world settings and provide the capacity to deliver those interventions at scale. Shelton explained that implementation typically occurs at the end of the traditional research process after generating the evidence base. That evidence base is frequently developed in academic set-
tings that may not reflect the experience of significant structural barriers and structural inequities that contribute to health inequity. She said addressing the disconnect between the evidence base and implementation efforts requires thinking early in the research process about creating that evidence base with a focus on community engagement and equity.
Shelton said equity-oriented implementation requires paying explicit attention to culture, context, history, values, assets, and the strengths of the community and ensuring those are integrated into the foundation of how research is conducted. She explained equity-oriented implementation requires prioritizing and building an evidence base that explicitly addresses health inequities, promotes equity, and addresses the root and structural causes of those inequities (Baumann and Cabassa, 2020; Baumann and Long, 2021). Achieving an equity orientation requires investing in the development and implementation of evidence-based interventions that build capacity among patient systems and communities and actively seek to promote health equity. She said equity-oriented implementation also requires reflecting on the evidence base and asking the following questions:
- Has the intervention been found to be effective among a population and setting experiencing inequities?
- Does the intervention reflect the lived experiences of communities impacted by structural inequities?
- How can the intervention be culturally adapted or contextually adapted?
- Is the intervention effective at reducing health inequities and promoting health equity?
- Does the intervention build community capacity?
- Does the intervention address social or structural determinants, such as discrimination, stigma, mistrust, and racism?
- Does the intervention work across sectors to address multilevel upstream policy, systems, and community levels?
Shelton said equity-oriented implementation requires changing the notion of what counts as an evidence-based intervention to incorporate consideration of who is involved in the development of that evidence base, and engaging communities and patients at the beginning to address issues of feasibility and acceptability (Bailey et al., 2017; Brownson et al., 2022; Mazzucca et al., 2021). She added that this requires considering both the scientific hierarchy of evidence as well as practice-based evidence and learning from community settings such as schools and faith-based organizations. She explained that grounding an intervention in the community enhances the focus on issues of flexibility, cost, relevance, and accounting for the local social and cultural
context. This approach also helps the process reflect local strengths and solutions and enhance benefits to the community. She described an example of her experience partnering with a group of Black lay health advisers and cancer survivors. She noted how important it has been to understand that, at least in part, they mistrusted the changing guidelines around breast and cervical cancer screening because the clinical trials that have informed many of the guidelines have not reflected their lived experience of having more aggressive tumors at younger ages (Shelton et al., 2021).
Shelton suggested funding organizations could support opportunities for researchers to consider adaptations that support health equity when they are building an evidence base. She said when building an evidence base, researchers should consider how they adapt programs to address some of the social determinants of health by adjusting where they are delivered, who delivers them, and how they support or enhance issues of health equity. She suggested funding organizations could also prioritize developing and testing dissemination and implementation strategies that build capacity and reach settings and populations equitably. She highlighted a need to build an evidence base for how to facilitate widespread and equitable dissemination. She said that building that evidence base requires identifying key adopters, stakeholders, and trusted messengers and their key characteristics across diverse settings. It also requires understanding the characteristics that influence the speed and extent of adoption (Kwan et al., 2022a; Stewart et al., 2018). She posited that health equity training could be included in implementation to reduce bias and promote health equity in health care systems.
Shelton said enhancing equity requires focusing on reach and representation from the beginning of the implementation process (Baumann et al., 2011). She said context matters when developing an implementation strategy, noting bias that exists within the clinical algorithms embedded in health systems. She suggested researchers and funders should be accountable for ensuring that research reflects a wide range of settings, populations, and providers, because that will shape the nature of the evidence base. She said community partners should be included in the process of developing metrics related to measuring an implementation project’s impact on health equity. She added that when planning implementation researchers should consider what will be meaningful, valuable, and important to the community; and how to return data to the community in a form that is accessible and actionable (Baumann and Cabassa, 2020; Proctor et al., 2011).
Shelton explained she has used the Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) evaluation and planning framework to bring an equity lens to considerations about who is reached, which settings are reached, and which populations and settings are able to implement and maintain an intervention. The RE-AIM framework has also helped her be
transparent throughout her work so as to be accountable when and where inequities arise (Shelton et al., 2020).
As a final comment, she encouraged everyone to think about how to accelerate the progress toward health equity and advance equitable impact at scale. She said doing so will require collaborating, investing, and advancing both meaningful community engagement and implementation science.
COMMUNITY PARTNERSHIPS IN RESEARCH
George Rust is professor of behavioral sciences and social medicine and director of the Florida State University College of Medicine’s Center for Medicine and Public Health and medical executive director for the Lyonne County Health Department. He began by noting that in the 7 years since he worked at AHRQ, there has been a beneficial shift in health care research beyond a focus on patients in the health care setting to considering whole people in a community context; moving from looking at one disease at a time to all forms of complexity, and from disparities to equity. He also appreciates increased engagement in multidimensional interventions in health care research, and that scientific methodology now includes dynamic interventions that change during the course of a research project. He also suggested AHRQ should consider furthering these efforts through developing a center for primary care research. He also suggested primary care related research could benefit from explicit funding for the National Center of Excellence on Primary Care, as well as regional centers for primary care research around the country.
Rust recounted that he began his career working at a migrant community health center funded by a program the Office of Economic Opportunity program started in the 1960s. That program sent funds directly to community organizations, which shifted the power dynamics toward the community. He suggested agencies funding health care research should consider a similar approach. Rust opined, “I think we need to think about models and mechanisms in which we can make that happen, so that it is not at the university level or investigator-initiated level to decide how much power sharing is going to happen or engaged the community is going to be. Real partners share the money, real partners share the power, real partners share control.” He encouraged workshop participants to move away from framing a challenge encountered when attempting to engage with a community as one of community trust, instead framing it as a matter of researchers’ trustworthiness. He emphasized that addressing power dynamics between researchers and communities need to be addressed before trustworthiness can be addressed. Rust referred the workshop participants to the American Association of Medical College’s principles of trustworthiness for additional information.
Rust called for reengineering the notion that translation, dissemination, and implementation is a linear process. He proposed an approach in which research, dissemination, implementation, and community partnership are all being done simultaneously in rapid dynamic cycles. He said if done with a focus on outcomes and not just processes, this new approach would result in dissemination and implementation happening at the same time as the research, supporting an iterative process. Rust stressed the importance of data supporting plan-do-study-act (PDSA) cycles and changing research interventions rapidly in response to feedback. This requires data to support rapid feedback loops that include repeated measures of actionable information at the local level. These measures will provide granular demographic and clinical strata. He added additional work is needed to develop vertically proportionate diversity among research agencies, universities and other institutions, and investigators.
Rust described Morehouse School of Medicine’s Prevention Research Center as an example of an effective approach to building a community partnership. He noted that Morehouse School of Medicine’s Prevention Research Center spent a year working with the community, not to develop its principles of community engagement but for the community to develop its principles of university engagement (Box 7-1). Rust closed by suggesting researchers should benchmark progress against an ultimate outcome of optimal and equitable health for all with an affirmative expectation that a project must achieve equity.
DISCUSSION
Community Partnerships and Engagement
Rivers asked the group to discuss strategies for better understanding and ensuring community responsiveness in implementation and dissemination work. Shelton said one important component of that strategy is long-term and flexible funding. She added that researchers should be explicit about their long-term goals, expect their research to address community priorities, and identify how that research relates to health equity. She suggested the above should be included as part of funding announcements and review criteria. She also suggested considering funding for project-agnostic infrastructure that supports engagement and continuity of relationships over time.
An audience member noted that the National Academy of Medicine recently shared a commentary about the need for community empowerment
and asked the speakers to discuss how researchers and funders could support community empowerment more effectively (Farhang and Morales, 2022). Rust replied that HRSA and its federally qualified health centers provide a good model for putting power in the hands of community-owned organizations. He said HRSA has developed strategies that set boundaries, that ensure funds are spent appropriately and tracked correctly; and ensure professional standards are met while empowering consumer-majority boards.
Gaglioti added that one of the most important approaches to support community empowerment is to align projects with priorities identified by patient and stakeholder advisory boards. She also suggested that medical and graduate schools should offer courses in academic humility.1 She opined that research grants are often not structured well for sharing power or resources. She suggested incorporating longer-term funding mechanisms that state explicitly that community partners are not just investigators but can be co-leaders, which should facilitate access to resources.
Rivers asked Puckrein how community empowerment could help generate data that is patient or community facing and responsive to the needs of different communities. Puckrein said one structural problem is patient advocacy groups do not have the capacity to go through the audit required when receiving a federal grant exceeding $750,000. He suggested funding agencies will need to address that barrier to improve access to funds for community-based organizations. In terms of data to meet community needs, Puckrein would like to build what he referred to as a community data lake that would give communities access to the data and the analytical capabilities to make use of the data. He said the success of an intervention that a community chooses to implement depends on having good data. Academic institutions can play a role by helping communities manage the data and turn it into useful information.
Rivers thanked Rust for being explicit about calling out issues of power and acknowledging the roles researchers play in actuating that problem. He asked Rust how he envisions the role of government agencies to solve this issue and address equity. Rust replied that power sharing requires restructuring the grant funding process, including the grant review and peer-review processes at the university level. Rust said accountability is imperative for eliminating outcome disparities, and researchers need to have flexibility to engage in rapid cycle change with an affirmative expectation of moving forward.
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1 Also referred to as Intellectual Humility, academic and intellectual humility is defined as (a) having insights about the limits of one’s knowledge, marked by an openness to alternative ideas, and (b) the ability to present one’s ideas non-offensively and receive information non-defensively (Wong and Wong, 2021).
Primary Care Research Planning
Rivers noted that the National Center for Excellence in Primary Care Research received $2 million in funding in 2022 and the President’s budget calls for $10 million, but less than 1 percent of federal research funding goes to primary care, and he asked Rust how a PCOR partnership could improve funding for primary care research. Rust replied that current funding, even though small, is a good start as it represents an acknowledgment of the importance of primary care research. He said it also provides a foundation on which to build. Rust suggested that researchers should build on that foundation by beginning to develop plans for effective use of future funding, including the connections and research centers to build, and the research networks closest to the front lines that are most likely to be doing research that will be implemented as it is being done.
Possibilities for Collaborations for Health Equity
Concluding the discussion, Rivers asked each panelist to briefly summarize their ideas for possibilities for collaboration among AHRQ, ASPE, and PCORI to improve and create new models that advance health equity. Shelton said it will be important to have a clear, synergistic, and explicit definition of what health equity means, since it means different things to different groups. That definition can then translate into expectations for grant funding, metrics, and prioritizing evidence-based interventions. Gaglioti encouraged the agencies to use their longitudinal funding to support infrastructure for project-agnostic engagement and partnership infrastructure that prioritizes equity in the measurement of comparative effectiveness research, builds researcher capacity around how to partner and engage, and gives time for those relationships to develop. She also suggested funding infrastructure to build a pipeline of people in the community who can engage in the work of advancing health equity. Puckrein suggested the agencies provide more resources to meet underserved community needs and to build a data infrastructure to support the work that will take place in those communities. Rust suggested each agency should ensure it operationalizes its core values in all of its grant funding mechanisms and review processes.
