[MUSIC] In this section, we're going to be discussing community-based participatory research. This slide contains a definition of community-based participatory research that was provided by the Kellogg Foundation. They define it as a collaborative approach to research that equitably involves all partners in the research process and recognizes the unique strengths that each brings. CBPR begins with a research topic of importance to the community and has the aim of combining knowledge with action and achieving social change. And so the key words that stand out in this definition are collaborative, equity partners, the concept of combining knowledge and action and achieving social change. The primary intent in CBPR is to transform research from a relationship where researchers act upon a community to answer a research question, to one where researchers work side by side with community members and define the questions and methods, implement the research, disseminate the findings and apply them. And so in CBPR, the hallmark of this approach is that community members actually become part of the research team. And researchers become engaged in the activities of the community. So it's more of a bi directional flow of information and capacity building. Who is the community? So, when we think about CBPR, there are different facets of what constitutes the community at large. You could think of it as the local community or neighborhood, and that can be people with the same health condition or family members, community leaders, political leaders or community advisory board. Consumer groups are also part of the community. This would be organizations such as the American Heart Association or the American Diabetes Association. Or different national organizations that represent health conditions and have constituents that either advocate for that condition or have it themselves. Health care systems also comprised the community and so when we think of health care systems, we think of that in terms of insurance company administrators or hospital administrators and health care clinics as well are a part of the community. So, doctors, nurses, medical assistants, office managers and schedulers, they are all a part of what we think of when we think about the community. There are several core values and principles of CBPR. As listed on this slide, CBPR recognizes the community as a unit of identity rather than the individual. It builds on strengths and resources within the community and it facilitates collaborative partnerships in all phases of the research. It also integrates knowledge and action for the mutual benefit of all partners. So, it's not just community members that benefit or researchers, both parties are coming to the table and mutually benefiting from this collaborative approach. CBPR also promotes a co learning and empowering process that attends to social inequalities, the types of inequalities that were highlighted in the previous discussion about social inequities. It involves a cyclical and iterative process and so it doesn't really have an ending point per se because of that aspect of co learning. It addresses health from both a positive and ecological perspective. And by positive, we mean that it's not just a deficit model of health where we're identifying shortcomings or things that are absent in the community. Rather, we're thinking about assets within a community and leveraging those assets to support the broader research, enterprise and social orientation toward that research. And then finally, CBPR disseminates findings and knowledge gained to all of the partners. So, it's not just researchers benefiting from the dissemination, but also community members and then thinking collaboratively about what that would look like. And so when we think about the principles of CBPR, and all of these core values, there's some key considerations. One is do you have a clear community of identity to work with? And do the people that you've called the community really see themselves in that way? Also, do you as a researcher or practitioner believe that attending to social inequity should be part of the research agenda? And there's sometimes a concern that this type of objective clouds the research process and then could reduce objectivity and the integrity of the research design. So we have found that adopting a social orientation to this type of work enhances its validity both locally and broadly speaking. The other thing that one must consider when thinking about applying CBPR is do you question the need to address health and therefore your research from an ecological perspective? So taking an ecological perspective requires examining determinants of health from more than one ecological level. It also means that as Dr. Gujuni noted before, I think you're considering the interplay between all of these different levels, which requires a more complex research design. Do you perceive community participation as exploitive rather than empowering? There is no doubt that the potential for exploitation can happen and past experiences definitely show examples of communities that were used with little change achieved to their health, social or economic status at the end of the research process. It can also be a burden to the researcher to assure that the process is not becoming exploitative. Then finally, are you committed to a participatory process, to community participation in the entire research process and to delivering meaningful value and benefits to the community? So all of these things are the types of questions to consider when you think about whether or not you should go forward with adopting CBPR for your research. There are several relationship dimensions that underlie CBPR. These types of things are communication, partnership or shared power in decision making. Trust or trustworthiness, respect, knowing and concordance in values. With communication, by that we mean the behavioral actions through which all other relational features are observed. With partnership or reciprocity, the way that this relates to CBPR is that it's a union that values the unique perspective and participation of each person. Trust is important in the CBPR process, because it entails the degree to which one believes another person is competent, caring, responsible and ethical. And similarly, respect recognizes each person's inherent value, and it's an attitude of unconditional positive regard. Knowing means being familiar with the person or that community and their unique life stories or histories, and the ways in which those things shape the trajectory of that community and consequently its relationship with research. And then finally concordance which simply means shared identities and values. Relationship centered behaviors include, the use of open ended questions to probe, community members perspectives, and then the provision of information and short clear statements that allow for opportunities to ask questions and then help people be able to have a sense of what they should expect from the work that you're doing with them. Also relationship centered behaviors are characterized by empathy, concern and support for various emotional needs. This slide attempts to depict the contrast between CBPR and traditional research. And in this slide, we have a series of boxes that show the spectrum of all of the different pathways from the beginning of the research project until the ending when findings are analyzed and disseminated. In the slide at the top, we see CBPR. And we see the different ways that CBPR is distinct from the traditional research process at each stage of doing research. So we begin with the health identified concerns, CBPR is marked by having full participation of community and identifying issues of greatest importance. In contrast with traditional research, the issues are identified based on epidemiological data and funding priorities. And I do want to just add that it is not as black and white as this depiction conveys and there is actually a closer link between traditional research and CBPR approaches but this slide does do a nice job of showing some of the key differences between these approaches. So when we go from the health identified concerns to the study that is designed and then funding sought to support that study. With CBPR, community representatives are involved in the study design and proposal submission. In traditional research, the design is based entirely on scientific rigor and feasibility and the funding requested is primarily for research expenses. So even in the funding part for CBPR, funding should be allocated to support the community representatives that are involved and actually generating the research idea and the proposal and helping the proposal to go through. The next phase of research is typically involves the recruitment of participants whereby participants are recruited and retention systems for those participants are implemented. In CBPR, community representatives actually provide guidance regarding recruitment and retention strategies and may even be involved not only in terms of providing guidance but providing direct strategies and closely involved in recruiting and retaining participants. In traditional research, the approach to recruitment and retention is based on scientific best guesses. When it comes to the design of instruments to measure the data that is being collected as well as the data collection processes themselves, in CBPR, measurement instruments are developed with community input and tested in the similar populations or the target populations. In traditional research, the measurement instruments are adopted or adapted from other studies and tested chiefly with psychometric analytic methods. For the phase pertaining to intervention, design and subsequent implementation, in CBPR, community members help to guide the intervention development and its implementation. In traditional research, researchers design the intervention based on literature and theory. And then finally with the last phase where the data is analysed and interpreted and the findings are disseminated and translated, in CBPR, community members assist researchers with the interpretation, dissemination and translation of findings in contrast to traditional research where researchers report findings from statistical analyses and published in peer reviewed journals. And one thing I would like to highlight is that CBPR researchers still report the findings and publish in peer reviewed journals but in CBPR, the dissemination strategies also include community based forums. So, as an example, presenting the information to clinics or to churches or to different community based organizations that may have a vested interest in the outcome of that research. And as we can see through talking about the differences between CBPR and traditional research, community based participatory research is really characterized again by having community members involved in every stage of the process. There are several ethical considerations involved in a CBPR project, time, burden on the community and then the potential benefit to the community. When we think about the time involved in conducting a CBPR project, what we often consider is do you as a researcher or a community partner have adequate time to invest in developing a CBPR partnership. As we know even from our own interpersonal relationships, it takes time to develop relationships, to build trust, to create modes of operation and to identify community assets. A rushed or half committed approach to building the partnership is likely to fail. Therefore, knowing in advance that you do not have time to invest in the process raises ethical considerations of raising expectations on community partners as well as research partners. There's also the burden on the community. Many communities in close proximity of universities are accustomed to being the subject of research studies and this is something that we are all very familiar with. The participatory methods involved in CBPR require significant time and energy on the part of community members. And so repeated CBPR studies in a single community can actually create a fatigue factor if tangible results are few and far between. And this speaks to the notion of CBPR as a modality for promoting social change from a policy perspective, and if those changes do not occur, this is something that can be burdensome to the community and as previously stated, create a sense of fatigue. We also need to consider whether or not the research objectives and the anticipated results will provide minimal or maximal benefit to the community. So a study that produces interesting results for science but limited results for those participating in this study can be problematic if community expectations have been raised through the CBPR process and there's the hope that the process and the study itself will yield more direct, tangible results. So what's incumbent on those conducting the CBPR project on the research side is to clearly communicate realistic potential research outcomes, and doing so can offset the potential harm that there will be unrealistic expectations. At the same time, it's also critical to assess and reassess community expectations throughout the research process. This would also prevent any possible negative effects. >> So we've spent a bit of time now talking about CBPR, and particularly how it applies to the research process. However, these same principles aren't only applicable to research, but also in other areas. This figure here is showing how community engagement is applicable to medical education. So this is a framework for lifelong learning for health professionals, that was produced by the National Academies of Science, Engineering, and Medicine. Within the triangle, there are sort of three pinnacles, education, organization and then the final one is community. Within the education, we see that particularly within the idea of experiential learning that community engagement is actually a key aspect of this, that if you're going out and having an experience, particularly within [LAUGH] the community where you serve, in order to do that effectively as an educator, we need to engage that community in the learning process. So again, we have a bidirectional flow, where the community is educating the medical student or other health professional trainee. And at the same time, that trainee is also educating the community member. In addition, there's a pinnacle of the triangle that is all devoted to community. And there's really three core tenants within this. First is reciprocal commitment, second is community priorities and third community engagement. So really in thinking about this, the community should be an equal partner. So, that is leveraging things like community assets, ensuring their willingness to engage, thinking about the networks and resources that are available within that community that you're wanting to create an educational program with. Also we need to think about the evaluation of health impacts towards equity and well being. Again, I'm thinking about that CBPR framework, we're applying this to the medical education arena. And finally, this is also an opportunity to really promote workforce diversity, recruitment and retention. So actually engaging those community members and bringing them within the health system and as health educators really will give us a more diverse experience and provide better education for everyone. So in addition to research and medical education, community engagement is also important for quality improvement or critical systems improvement efforts. This is a model that was also produced by a different report from the National Academies of Science Engineering and medicine, thinking about how do we improve care. Ultimately, there are six core tenants here. First is a commitment to health equity, data and measurement is the second, a comprehensive needs assessment is third, fourth is collaborative partnerships. Fifth is care continuity and six engaging patients in their care. These aren't necessarily meant to be a step by step but is really an iterative process where we go around and around and around. At the core of all of this is actually community informed and patient-centered care. And here we have the opportunity, and again, thinking about what is community? Here within a health system, particularly a quality improvement effort, health care providers are key tenants of that community. And so here providers design care to promote functioning in the patient's home or neighborhood or other chosen environment. So we're really engaging two different levels or two different types of community members here, the health care providers as well as the patient's family, neighborhood, an environment with which they spend their time. Second, for different patients, the same function such as self management support can be realized through different forms. So having an adaptability, whether it's a care manager or a community health worker that we can better tailor to the needs of the patient. And again, we need to engage the community in thinking about knowing how to even triage that type of system. And that concludes the section on community based participatory research. [MUSIC]
