Lauren Hughes explained the second virtual workshop would start with a keynote presentation focusing on achieving equity through patient-centered outcomes research (PCOR) that includes meaningful community engagement. Subsequent sessions would discuss possibilities for collaborations among the Agency for Healthcare Research and Quality (AHRQ), the U.S. Department of Health and Human Services Assistant Secretary for Planning and Evaluation
(ASPE), and the Patient-Centered Outcomes Research Institute (PCORI) to improve health equity and the sustainability of their efforts.
Karin Rhodes, AHRQ, explained that AHRQ, ASPE, and PCORI worked independently in the first 10 years of the Patient-Centered Outcomes Research Trust Fund (PCORTF), but since Congress reauthorized PCORTF, the three agencies have begun collaborating more. AHRQ and PCORI, for example, created a joint workgroup to establish a common purpose, identify themes, develop strategic objectives, and prioritize opportunities to expand their collaborative efforts. One of AHRQ’s strengths, she explained, is its infrastructure for reviewing and synthesizing evidence and translating that evidence to practice. AHRQ and PCORI have collaborated on dissemination and implementation projects as well as learning networks. She also described an example where an AHRQ evidence report identified new evidence gaps, so PCORI invested in research to address those gaps. The two agencies are also working together on training to address mutual priorities. Rhodes described a new AHRQ-PCORI scientist training program that is embedded in its learning health system. AHRQ and PCORI are targeting this training program at underserved communities, with an emphasis on primary care, by recruiting and training individuals from underrepresented and marginalized communities.
Sergio Aguilar-Gaxiola, professor of clinical internal medicine, founding director of the Center for Reducing Health Disparity, and director of the community engagement program at the University of California Davis Clinical Translational Science Center, noted that he is also co-chair of the National Academy of Medicine’s (NAM’s) organizing committee on Assessing Meaningful Community Engagement in Health and Health Care Programs and Policies. The goal of this project, said Aguilar-Gaxiola, was to consider how the committee might build effective, evidence-based, community-engaged indicators and metrics for measuring meaningful community engagement in a wide range of settings. Such indicators and metrics could then help shape how health care programs and policies are developed, implemented, and overseen, with special emphasis on those most in need. The organizing committee produced five resources: a conceptual model (released February 14, 2022), impact stories and videos, measurement instruments, a resource website,1 and a NAM special publication that it will publish in fall 2022. Community engagement, the central feature of the conceptual model (Figure 6-1), emphasizes the criti-
cal importance of engaging and listening to communities and stakeholders to hear what matters to them regarding health, health care, and health equity. He noted that many of the same principles AHRQ includes in its strategic framework form the basis of the conceptual model. Trust, for example, appears throughout the model and its four domains: strengthened partnerships and alliances, expanded knowledge, thriving communities, and improved and sustainable health and health care programs. In addition to physical health, the model includes mental health, as well as community resilience and community power. Aguilar-Gaxiola said the central goal of the model is to achieve health equity through transformed systems for health by addressing the drivers of health; the drivers of change in health and health care; and the social, political, racial, economic, historical, and environmental context.
Aguilar-Gaxiola posed two questions for AHRQ to consider: How can AHRQ consider the elements of the National Academy of Medicine conceptual model for community engagement in its decision-making and strategic planning process structures as well as in the design and review of its funding opportunities for research dissemination and training? And, can AHRQ ask its funders, researchers, and institutions to consider this framework in project design?
He then discussed several areas of alignment between the NAM model and AHRQ strategic framework. Those include goals related to
- Improving health equity,
- Improving patient and community engagement,
- Building trust and trustworthiness,
- Addressing mental health and the social determinants of health, and
- Promoting learning health systems and centers of excellence for development and advancement.
He added that the NAM conceptual model and the AHRQ strategic framework share several priorities, including
- training the next generation of researchers;
- building data, measurement, and analytic capacity;
- accelerating uptake of evidence in practice; and
- providing evidence to inform needed policy changes to sustain implementation of interventions that produce outcomes that matter to patients and address health inequities.
He closed by emphasizing the NAM model and its methods can support AHRQ’s training of the next generation of patient-centered outcomes researchers.
Session moderator Jen Brown, cofounder and codirector of the Alliance for Research in Chicagoland Communities and lecturer in preventive medicine at Northwestern University, asked Aguilar-Gaxiola if he could further discuss how the community engagement model could help AHRQ develop its own community engagement mechanisms and structures that reflect elements of trustworthiness, co-creation, and shared power. He replied that the nation’s experience during the COVID-19 pandemic pointed to the critical importance of trust and trustworthiness that has to be built through bidirectional relationships with various organizations and institutions by listening to and engaging the main stakeholders (the people being served) while considering their culture, language, and diversity. He noted that AHRQ’s guiding principles include being patient centric, evidence based, collaborative, and stakeholder driven, as well as emphasizing continuous learning. Those principles, said Aguilar-Gaxiola, were central to the committee’s assessment of meaningful community engagement.
Brown remarked that the commentary the committee released pointed out that the fundamental question is not whether entities think they are engag-
ing communities, but whether communities feel engaged, which she noted is a powerful shift in perspective. She then asked Aguilar-Gaxiola to discuss how the committee operationalized that perspective in its work and if there were any lessons for AHRQ or this workshop. He replied that the steering committee that preceded the full organizing committee had a substantial change in perspective just by including—and listening to—community members, pointing to the importance of iterating based on community input.
An audience member asked Aguilar-Gaxiola to discuss how the community engagement conceptual model builds on community-oriented primary care (Institute of Medicine, 1983, 1984a, 1984b). He said there is alignment between the conceptual model and community-oriented primary care, both emphasize listening to patients and their families and building trust.
Brown noted that while it is important to work with a variety of stakeholders to have authentic, meaningful community engagement, that process can be complex, particularly when it comes to the power differential that can exist between stakeholders. She asked Aguilar-Gaxiola if he could discuss any lessons the model provides regarding this challenge while keeping with the principles of community engagement. He replied that the plurality and diversity of the stakeholders resemble a microcosm of what occurs in communities and even in families. The key, he said, is to be aware of those dynamics and communicate openly, authentically, and frankly to reach a common understanding of what matters for each particular stakeholder. In that regard, the NAM model and the guiding principles of community engagement can provide a roadmap for focusing on what matters and working toward system transformation that achieves health equity.
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