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Workshop 1, Session 2: Training PCOR Investigators

COLLABORATIONS FOR TRAINING COMMUNITY-BASED RESEARCHERS

Nivedita Mohanty, chief research officer and director of evidence-based practice at AllianceChicago and clinical associate professor at the Feinberg School of Medicine, discussed examples of patient-centered outcomes research

(PCOR) training programs for community health center staff. She began by describing the Collaborations for Health and Empowered Community-Based Scientists (CHECS) program. CHECS is a training and mentorship program for community health centers run by AllianceChicago.¹ AllianceChicago is a network of community health centers across the nation for which Mohanty’s organization provides technology infrastructure, a clinical collaboration infrastructure, and a structure for practice-based research. The 72 safety-net organizations in the network serve over 3.6 million patients at over 400 sites of care delivery in 19 states. AllianceChicago has a mission of improving personal, community, and public health through innovative collaboration. Mohanty noted that community health centers are committed to whole-person care, which is why it is important that PCOR researcher training includes members of the community health center workforce in advancing patient-centered outcomes research.

Mohanty explained that community health centers are the largest source of primary preventive care for the nation’s medically underserved adults and children. These organizations provide care for 1 in 9 children, 1 in 3 people with incomes at or below the federal poverty level, 1 in 5 residents of rural communities, and nearly 377,000 veterans. Mohanty said approximately 29 million people nationwide rely on a Health Resources and Services Administration (HRSA)-supported community health center for affordable, accessible primary care. She noted that PCOR research questions often originate outside of community health centers, which is something she designed CHECS to change.

Mohanty described an experience she had when she was a full-time pediatrician that inspired her interest in research. She was having difficulty drawing blood to screen for jaundice from a first-time mother’s newborn child. The mother asked her why she was not using the transcutaneous device that was commonly used in hospitals to screen for jaundice. One of the reasons her clinic had not implemented that tool was it had not been tested extensively in primary care, particularly among children of color, who were the majority her clinic’s patients. She was able to procure seed funding to explore the reliability of the transcutaneous device in her setting because of her faculty position at a nearby university. This research produced findings that resulted in a change in practice to use the transcutaneous device to test bilirubin in her clinic.

She noted that in her role at AllianceChicago, she has learned that not every practitioner has the same opportunity to conduct research to answer questions they might have. The CHECS program is intended to address that. CHECS helps her organization’s stakeholders obtain experience in PCOR through a Eugene Washington Patient-Centered Outcomes Research Institute (PCORI) Engagement Award. This allows community health practitio-

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¹ Additional information is available at https://alliancechicago.org (accessed July 17, 2022).

ners to cultivate ideas that their experiences, patients, and communities have informed in partnership with academic researchers and then pursue funding to implement their research ideas.

Mohanty explained CHECS participation has several benefits including

• obtaining PCOR skills and knowledge;
• support to investigate ideas for improving primary care services and patient outcomes in community health;
• support and mentorship from experienced PCOR researchers;
• continuing education opportunities; and
• opportunities for peer-to-peer learning and development of partnerships across community health centers.

The CHECS program’s success relies on developing capacity to support community health center investigators to build research skills to explore research ideas and helping those investigators learn how to engage teams to implement their research and further define their questions. One of the CHECS program goals is that participants who complete the program will be able to pursue funding, either alone or with a partner, to research their ideas in the context of community health centers.

The CHECS program is an online, self-directed learning curriculum that AllianceChicago offers in conjunction with partners in the Clinical Directors Network, a nonprofit, practice-based research network and clinician training organization. It uses the Enhancing Community Health Center Patient-Centered Outcomes Research Engagement (EnCoRE) online training program. EnCoRE allows people to view trainings in a self-directed manner and receive continuing education credits at no cost. Mohanty and her colleagues developed a series of training webcasts based on feedback from Alliance Chicago’s health center partners about training needs to conduct PCOR.

AllianceChicago recently conducted a 12-month, intensive mentored PCOR training fellowship program. Mohanty explained that funding for the fellowship program supported in-person travel for training sessions, salary support for protected time for the fellows, and an honorarium for the mentors that supported the fellows throughout their projects. Training topics included PCOR, how to engage patients with lived experience, community-based participatory research, research collaboration, using clinical data for research, research dissemination, grant review, and mindfulness self-coaching. Fellows had a variety of roles at community health centers, such as medical assistants, nurse practitioners, and chief medical officers. The fellows collaborated with their mentors on projects relevant to community health. Mohanty added that the program was also fortunate to work with academic partners who were generous with their time. Participants valued the pragmatic and hands--

on skills they developed, particularly regarding stakeholder engagement, the intersection of quality improvement and research, basic research methods and study design, fundamentals of statistics, and how to achieve high-impact dissemination other than through peer-reviewed publication.

Mohanty described several observations and lessons learned from her organization’s experience with the fellowship program. The mentorship component of the program created valuable opportunities for bidirectional learning. Two important lessons were that learning flowed bidirectionally between fellows and mentors and that competing priorities at community health centers are pervasive. PCOR investigators outside of the traditional academic setting find it challenging to procure seed or research funding. The program also highlighted some specific facilitators of success. Those include

• providing structured and protected time for PCOR training,
• ensuring fellows and mentors have aligned interests,
• engaging in multimodal communication with patients involved in research,
• opportunities for peer interaction, and
• buy-in from community health center leadership.

Mohanty noted that three projects that were developed in the fellowship program received implementation funding. Eighty-eight percent of the fellows reported that the in-person trainings strengthened their skills and the overall project, and 92 percent said that mentorship strengthened their skills and the overall project. She noted that all of the organizations that participated in CHECS have since engaged in multiple research studies and collaborations. Mohanty added that AllianceChicago continues to offer opportunities to build partnerships, PCOR training, and capacity-building opportunities.

EDUCATIONAL TRAINING FOR THE NEXT GENERATION OF INVESTIGATORS

Cynthia Gonzalez, director of the Pardee RAND Graduate School’s Community-Partnered Policy and Action Stream Ph.D. program in policy analysis and assistant professor at Charles R. Drew University of Medicine and Science, discussed equity-centered collaborations that went beyond traditional systems of training PCOR investigators. She began by noting that her identity as “a first-generation Chicana from Watts, an inner-city neighborhood in Los Angeles” has informed her work. She explained that in order for her to understand health disparities and inequities, she had to become a student of her own community. That effort led to her interest in participatory commu-

nity engagement, place-based health, and community partnerships. Gonzalez described several of Charles R. Drew University of Medicine and Science’s (CDU’s) collaboration programs. CDU is located in Los Angeles County and was founded with a commitment to cultivating diverse health professional leaders who are dedicated to social justice and health equity for underserved populations through outstanding education, research, clinical service, and community engagement.

CDU’s core curricular experience, the CDU Advantage,² has a social justice focus that includes local and global perspectives. Gonzalez explained that CDU’s strong health disparities research portfolio enables students to engage in research through specific focus areas that are relevant to the communities that surround the university. CDU has incorporated various engagement models as part of its curricular activities to help ensure applied learning. One such model is the community faculty track.³ This is a unique pedagogical approach to academic-community partnerships that recruits local resident community experts affiliated with a community of interest or a nonprofit agency to serve as faculty in the College of Medicine, similar to clinical faculty. The community faculty members offer critical expertise that emphasizes the importance of understanding both community and academic perspectives to improve a community’s health. They teach courses that introduce students to critical social issues, the principles of community engagement, and capacity building in community health, public health, place-based health, organizational development, social justice, equity, and civil rights. Community faculty also collaborate with CDU researchers as co-investigators, serve as principal investigators for their own research projects, and participate in the admissions review process for medical school applicants. In addition, community faculty support knowledge dissemination by planning local conferences, presenting their work at local and national conferences, and sitting on university committees, including institutional review boards.

The Pardee RAND Graduate School,⁴ where Gonzalez serves as the director of the community-partnered policy and action stream, is a multidisciplinary graduate program focused on policy analysis and the ways in which policy analysis shapes society that also offers a full-time Ph.D. program. Students at Pardee RAND apply to one of three engagement streams: research, analysis, and design; technology applications and implications; and community-partnered policy and action, which is the stream Gonzalez leads. The expectation for

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² Additional information is available at https://www.cdrewu.edu/COM/PMA/CDUAdvantage (accessed September 14, 2022).

³ Additional information available at https://www.cdrewu.edu/research/Center/Community (accessed September 14, 2022).

⁴ Additional information is available at https://www.prgs.edu (accessed July 17, 2022).

this third stream is that it will merge academic and applied work, training students to bring their research into action and implementation. The focus of this stream is two-fold: develop and train the next generation of innovative thinkers, and do so by working with community partners to effect change. Coursework includes learning about intersectionality, engaging communities in research, mixed methods research, and dissemination and implementation science.⁵ Students are required to have a community partner as an external member of their dissertation committee. Students develop interpersonal skills including how to practice cultural humility, engage in deep listening, and work to understand multiple perspectives and experiences relevant to the history of the communities that they aim to serve. Gonzalez explained that the entire learning experience emphasizes valuing community knowledge and building relationships with those partners to produce sustainable change. She said the holistic curriculum exposes and prepares students to be future scholars who are mindful of how social dynamics affect research.

Gonzalez then spoke about the Watts Rising Collaborative,⁶ a partnership between Watts residents, more than 50 cross-sector organizations led by the Los Angeles Housing Authority, the Los Angeles mayor’s office, and the local city council district. In 2019, the collaborative received a grant from the state of California to fund 24 community-identified infrastructure projects. These projects were designed to combine data-informed decisions and community engagement to develop strategies to reduce greenhouse gas emissions, promote economic development, improve public health, engage community, and avoid displacement through data-informed decisions and community engagement. The Watts Rising Collaborative partnered with investigators to assist in data collection through neighborhood assessments. This included interviews and focus groups to help investigators understand community reach, priorities, assets, and needs, as well as to ensure that projects produced meaningful change in public and environmental health outcomes.

Gonzalez noted the Watts Rising Collaborative also offers opportunities for students from middle school to graduate school to participate in projects. The collaborative has also created a structure that enables community-academic partnerships and immersive training that incorporates equity-minded approaches. She added that these activities enable collaborations that break down silos, engage and involve the community, and allow researchers to gain a

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⁵ Dissemination and Implementation Science (DIS) is a growing research field that seeks to inform how evidence-based interventions can be successfully adopted, implemented, and maintained in health care delivery and community settings (Holtrop et al., 2018).

⁶ Additional information is available at https://www.wattsrising.org (accessed September 14, 2022).

greater understanding of the priorities of people in communities of color and communities that have been historically marginalized and isolated.

Gonzalez concluded her presentation by sharing lessons she has learned from her experiences with the projects she discussed. Those lessons included the following:

• It is critical to understand and recognize that power dynamics informed by historical and present-day opportunity differentials have disproportionately impacted specific communities.
• People affected by the issues that a research project is designed to address should be included in the project as active participants with valuable expertise and insight.
• There is a need for collaboration across disciplines and sectors while also engaging with and learning from the community.
• PCOR researchers should seek opportunities to include community-based participatory research methods and qualitative and mixed methods into research models.

She explained that qualitative and mixed methods research add a narrative to the metrics that provide a deeper understanding of what factors most affect a community and how it responds to challenges.

DISCUSSION

Session moderator Meghan Lane-Fall, vice chair of inclusion, diversity, and equity; the David E. Longnecker associate professor of anesthesiology and critical care; and associate professor of biostatistics, epidemiology, and informatics at the University of Pennsylvania Perelman School of Medicine, led the discussion.

Research and Quality Improvement

Lane-Fall asked Mohanty to speak about how she conceptualizes quality improvement and research and the relationship between the two. Mohanty replied that quality improvement and research both play a critical role in improving patient care and the function of health care systems. She opined that community health centers may have less difficulty conceptualizing quality improvement because they have a built-in infrastructure for it as part of clinical care and can implement change fairly rapidly. Research typically involves more structured protocols, has more regulatory components to consider, and usually is more time intensive. She explained that the goal of research is to

produce findings or evidence that might be generalizable, whereas quality improvement focuses on things that may be more relevant on a local scale.

Future Training Investments

Lane-Fall asked Gonzalez to discuss what Agency for Healthcare Research and Quality (AHRQ) should consider when making future investments in training PCOR investigators. Gonzalez replied that AHRQ should consider opportunities to bridge the applied research setting and academic research setting in a manner that effectively engages the strengths of both settings. She also highlighted that researchers would benefit from engaging with the communities that they seek to study to gain insight that will inform more effective research questions. Mohanty suggested that future PCOR training investments should include community-based research. She also suggested including requirements for thoughtful integration of community members during the planning process or developing partnerships with community organizations in future funding opportunities.

CDU’s Community Faculty Model

Lane-Fall asked Gonzalez to further discuss CDU’s community faculty model, including any insights around how it has been received by stakeholders. Gonzalez explained that the community faculty model stems from a partnership between an academic researcher, the late Dr. Loretta Jones, and an exceptional community in South Central Los Angeles. Jones recognized that there were people in communities, which she referred to as the Ph.D.s of the sidewalk, whose expertise in health equity and community engagement was just as relevant as that of academic scholars and aligned well with the university’s mission and values. This led to creation of CDU’s community faculty model. CDU also established a division of community engagement that identifies community leaders who might be interested in becoming a community faculty member.

Sustaining Community Based PCOR

Lane-Fall then asked the panelists to discuss approaches for developing sustainable community-based PCOR projects. Mohanty replied that her organization has had some opportunities that enable them to build sustainable infrastructure through funds from federal grants and suggested that funding to support infrastructure development rather than specific projects might help improve sustainability. She noted that while the duration of the funding

was limited, the resulting infrastructure remains, including committees that meet monthly to evaluate research projects for their potential benefits to the community. She noted that it is also important for researchers to educate organization leadership about the benefits of their program in order to garner the institutional support necessary for sustainability.

Gonzalez agreed that infrastructure investment can benefit sustainability, noting that while the community faculty program started with a grant, it now is embedded in courses, admissions reviews, and partnerships with other academic institutions. However, the Watts Rising Collaborative continues to rely primarily on grant funding for its work, which creates challenges around building sustainability into some projects.

Identifying and Balancing Priorities

An audience member asked Gonzalez to discuss how she prioritizes which community issues to focus on in her various roles and how that reflects her relationships and level of trust with certain communities. Gonzalez replied that she is passionate about working in Watts because members of her family live there and her work can help improve the quality of their lives. She added that in her work, she tries to focus on community assets as much as on needs or deficits and on priorities set by the community. Gonzalez noted that this approach requires cultural humility, adding, “We cannot assume that we know what communities are experiencing. We have to ask.” She explained that she considers her work in academic institutions training future health care and policy professionals as capacity building. Those future professionals will be prepared to focus on solving the issues that are significantly impacting certain communities while centering social issues such as discrimination and inequity.

Lane-Fall commented that she struggles as a program director to balance the excitement of her trainees about a project and the needs of the system in which they are embedded. Mohanty agreed that this is challenging, and noted she tries to consider where priorities align. Mohanty explained that in her organization’s community health centers, alignment occurs with ideas and projects around quality initiatives where two different priorities can work synergistically and where there can be opportunities for collaboration.

Gonzalez said that the academic institutions she works for are seeing a more diverse set of students enter their programs. She noted this includes more students of color, more students who are parents, more first-generation students, and more students with backgrounds of economic insecurity. She explained that while increased student diversity is beneficial, that diversity is accompanied by a greater diversity of lived experiences and research interests. She noted that while PCOR training programs should embrace students’ diverse passions, skill building remains essential and balancing the two can

be challenging. She described a learning opportunity that developed around an initial conflict between the research interests of a student collaborative and the needs of the grant, and the priorities of the community they were serving. She recounted how one of the collaborative’s priorities was to reduce greenhouse gas emissions, in part by planting trees in a community that had very few trees. However, the community they had partnered with wanted jobs, not trees. The solution was to connect greenhouse gas reduction with workforce development, by training residents for jobs in the green industry, such as solar panel installers.