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Workshop 1, Session 1: Developing a Coordinated Interdisciplinary Approach to Decision Making around Where to Focus AHRQ’s PCORTF Investments

Session moderator Catherine Kothari, associate professor and population health scientist in the division of epidemiology and biostatistics at Western Michigan University Homer Stryker MD School of Medicine and senior epidemiologist for Cradle-Kalamazoo, began the session by highlighting several concepts. Interdisciplinary, she said, refers to the various clinical and community sectors that touch health care systems and the delivery of health services. This includes the actors within these sectors and the individuals who influence or make medical, administrative, or policy decisions, including the patients themselves. Health equity, she continued, refers to more than just equal access; it includes reaching people where they are with respectful and responsive care and services. Finally, she described engagement as going beyond having a conversation to understanding each other’s perspectives and adapting behaviors and practices to meet each other’s priorities more effectively.

A FOCUS ON GOALS AND AUTHENTIC PARTNERSHIPS

Reshma Gupta, chief of population health and accountable care at University of California Davis Health, a member of the University of California Health’s population health steering body, and co-director of Costs of Care, Inc., began her presentation by noting her positions as a practicing internist, trained health services researcher, and a member of the population health leadership team across all University of California Health campuses. Through these roles, she has experienced all sides of the challenges that investigators face when trying to engage key partners in patient-centered outcomes research (PCOR). These challenges include bridging interdisciplinary silos and the need for authentic community, health system, and organizational engagement.

Gupta said that an important lesson she has learned more from her experiences as a manager rather than as a researcher is that it is important to understand who the key partners are, what matters most to them, what the likely friction points between key partners are, and what strategies will mitigate those friction points. Ultimately, she said, co-creation¹ and human-centered design² help provide answers to those questions. She identified the following as key partners in PCOR:

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¹ Co-creation refers to involving community members or other relevant stakeholders throughout the research process, from study design to dissemination of the results (Stock et al., 2021).

² Human-centered design is a process and a set of techniques used to create new solutions for the world. Solutions include products, services, environments, organizations, and modes of interaction. The reason this process is called “human-centered” is because it starts with the people we are designing for (Göttgens and Oertelt-Prigione, 2021).

• patients and families;
• community members and community leaders;
• clinical specialists, nurses, and pharmacists;
• occupational, respiratory, and speech therapists;
• care managers and navigators, community health workers, social workers, and goal-of-care extenders;
• mental health counselors;
• financial counselors;
• health care delivery system representatives with a special focus on community health and safety-net facilities to ensure that equity is considered;
• social science specialists, such as economists; and
• representatives of rural health, state, and public health directors.

She noted that the opportunity exists for the Agency for Healthcare Research and Quality (AHRQ) to cocreate strategies for improved fund allocation through advisory structures that include community partners. Their input can help guide AHRQ’s investments to improve alignment between investigators and partners.

Gupta said that building trust plays an important role in reducing points of friction. Partners may be concerned that their input may not be fully incorporated. This can lead to missed targets on implementation, limited results, adversely affected relationships, and a lack of a sustainable plan. Another area in which trust plays a role in reducing points of friction is related to relationships. Trust must be developed between the investigators and the community-based organization (CBO) so that the CBO can feel confident the research process will not compromise the relationships that the organization relies on to do its work. Gupta explained that for a study to impact the community, health system, or partner organizations, investigators must grasp the historical context and root causes of the problem they are trying to address before they jump to developing solutions.

She noted that misalignment between researchers’ proposed study population and the focus areas of CBOs can also create challenges. For example, some individuals in the community may have health issues that are too complex to be included in a given study, or the study’s exclusion criteria may be too broad to include certain community members. Community partners, she continued, may want the scope of the research to increase so that the intervention can benefit a larger share of their constituents. In addition, the leaders of some organizations may themselves want to benefit from the research by way of recognition or other means when the resulting intervention is disseminated.

Gupta emphasized that authentic engagement with the community, health system, or organization is paramount to understand what matters to these

partners. These groups want to ensure that engagement is not being conducted only for the purpose of completing a study requirement. Gupta explained that while there is no one type of partner, other common desires include

• Feeling understood about the external and internal pressures, outcomes, resources, challenges, and strengths they have;
• Staying aligned with patient, community, or organizational goals and strategic plans;
• Co-creating plans through a process of coming to understand the problem, discovery, potential solutions, interventions, dissemination, and communication together; and
• Recognizing that they are doing much of the hard work and that implementation opens vital relationships they have with their own staff or their partners to the investigators.

Gupta offered ideas for how a flexible strategic approach might relieve common friction points. Strategies that may be beneficial to address concerns about trust include adding formal language about building trust through co-creation in partnership agreements, understanding the historical context and root causes of the problem to be studied, laying out a plan for sustainability, and recognizing partners. Moreover, Gupta suggested the example of including time for researchers to understand the community’s current state and root causes of the problem to be studied. It could also be helpful to include a qualitative component to help address concerns around real-world effects of these interventions, Gupta added.

PRACTICE-BASED RESEARCH NETWORKS AND COMMUNITY ENGAGEMENT

Donald Nease, professor of family medicine and the Green-Edelman Chair for practice-based research at the University of Colorado Anschutz Medical Campus, spoke from the perspective of someone who has led several research infrastructures at his institution. Such programs include the community engagement infrastructure that is part of the Colorado Clinical and Translational Sciences Institute (CCTSI) and the State Networks of Colorado Ambulatory Practices and Partners (SNOCAP) practice-based research networks (PBRNs), of which there are five in Colorado.

Nease explained that community and patient advisory group members are involved throughout the entire research process. For example, one of the PBRNs recently completed a survey of practices that one of the patient advisory groups suggested because it was interested in learning how clinician and staff burnout affects care from the patient’s perspective. The advisory group

helped design questions that the PBRN distributed to practices to identify the signs of burnout that patients observe. Advisory group members also copresent and coauthor presentations and papers and are involved in the local dissemination of a study’s findings. Nease said that what the advisory council members say when presenting about a research project is often more compelling than what the research team says. In addition, patient and community advisory groups can serve as consultants to other groups around the country or coinvestigators on other projects.

Nease said one of the ways in which CCTSI facilitates local uptake and use of evidence is through an approach it calls community or boot camp translation. This approach began with a project funded by the Centers for Disease Control and Prevention focused on increasing colorectal cancer screening rates in rural eastern Colorado. CCTSI partnered with the High Plains Research Network’s community advisory council and brought an expert in colorectal cancer to one of its meetings. Council members had the opportunity to ask questions and interact with an endoscopy simulator to better understand the procedure. That hands-on opportunity led the council members to realize that colonoscopies are a preventive procedure that can remove precancerous polyps before they develop into full-blown cancer. At that meeting the council members asked if it was possible to call the procedure something other than colorectal cancer screening. The resulting discussion led to a shift in the language to make it more relevant for that community.

Nease noted that both the SNOCAP and CCTSI infrastructures share several core principles, the first of which is that while facts may be universal, implementation is local. For example, while colorectal cancer screening can save lives, communicating that message effectively so that people get screened often requires an understanding of the needs and priorities of the local community. In that regard, co-creation is an important part of the programs he oversees.

The second core principle is “Nothing for us, without us,” which Nease said means working with community members from the very beginning of a project. The third core principle is that outreach begins with an answer, while engagement ends with one. He noted that often in academics, outreach occurs in the form of bringing answers to a community without first engaging with that community to learn their questions, which at times can be an effective approach. However, bidirectional learning that ends with an answer can better fit the purpose and interests of a particular community.

In closing, Nease listed questions that he and his colleagues ask themselves regularly to ensure effective and equitable community engagement:

• Do we have the right people at the table who can provide a perspective from their lived experiences, and do they include those who would be affected by such a project?

• Are we engaging people equitably, and have we lowered all the barriers to hearing their voices through actions such as holding meetings at times convenient for the community rather than for the researchers or by providing child care?
• Is our work building capacity and will our participants be able to carry this experience to other kinds of work?

DISCUSSION

Considering Opportunities for Professional Education

Kothari opened the discussion with a question from a workshop participant, who asked Nease and Gupta to discuss how the work they are doing could be translated to efforts directed toward influencing medical school curricula and to shift the emphasis from specialization toward community-engaged primary care. Nease replied that his institution has a tradition called mentored student activity for its medical students, and one option is for students to work with faculty who are engaged in community work. One project, called Colorado Students Against Racism in Medicine, has continued longitudinally through several successive groups of medical students. The success of those programs recently led his institution to redesign its medical school curriculum to include community engagement and ensure that all students have a community engagement experience that spans the 4 years of medical school.

Gupta said that the University of California’s medical schools have a number of programs focused on community-engaged primary care. Some programs, courses, and electives link students to community engagement outreach efforts focused on communities affected by health care disparities or those with social needs. She said that medical schools are also starting to integrate the idea of co-creation into coursework.

Considering Partner Relationships

The next questioner asked Nease if he encountered challenges with whether community members that were asked to participate in advisory groups felt comfortable in that role. He replied that he is frequently asked how he recruits community partners. His answer is that community members tend to care about what is going on in their community regarding health care, so they usually welcome the opportunity to participate in an advisory group. He acknowledged that when a community translation effort first starts, there is some of the aforementioned concern among the participants, so he and his colleagues spend time in the initial meeting building a sense of belonging and

community within the group. This helps ensure that everyone feels they can share their perspective freely.

Kothari then asked the two panelists if they could describe a situation where partners had competing interests. Gupta replied that she has many examples of this challenge. One example involves a study around equity in lung cancer screening. While everyone was motivated to move this project forward and increase its scale quickly, health care systems across the nation are short of staff to work on new initiatives. As an administrator, she has to deal with the challenges of prioritizing multiple initiatives running simultaneously, while as a researcher, she wants her project to be at the top of the prioritization list. The key to resolving conflicts and competing interests, she said, is to have honest conversations built on trust among the partners and to put in the hard work needed to find a solution. Nease explained that the process of collaborating with research partners is not necessarily about reaching consensus, but it is to ensure that no one group dominates the process and everyone involved can see their effect on the final product.

Kothari asked Gupta if she could speak from her perspective and experience about whether there are points in the dissemination and implementation of research findings where she finds it most critical to engage partners and if so, if there are specific partners that are critical to engage at specific points in the research process. Gupta answered that when she works with her program’s fellows, she emphasizes that academic publication is not sufficient for dissemination. The research team is often not the right group to deliver key messages. It is important for community partners to play a significant role in dissemination because they have insight into how best to deliver information in a manner that will be useful to the community.

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