Introduction to Community-Engaged Research

1. Introduction to Community-Engaged Research Begin Training Welcome to the University of Kansas Medical Center’s Introduction to Community-Engaged Research. This training provides a brief overview of the concepts of community engagement for investigators interested in collaborating with community partners on research projects. All researchers who indicate a community component to their projects on the Regulatory Knowledge and Support survey must complete this course.

2. Introduction: What, Why and Who What is Community Engagement? CDC defines community engagement as “the process of working collaboratively with and through groups of people affiliated by geographic proximity, special interest, or similar situations to address issues affecting the well-being of those people.” Community-engaged health promotion, policymaking, and research are based on the social ecological model of health which conceives of health as the interaction between the individual, the community, and the physical, social, and political environments. Behavior, lifestyle, and incidence of disease are imbedded in the context of the community. Successful interventions aimed at improving population and individual health begin with critical knowledge of the community. The best way to obtain this knowledge is by engaging community partners who bring their own perspectives and experiences to a project.

3. What is a Community? “Community” is not just a geographic term synonymous with places such as a city or a neighborhood. Instead, a community is any group of people linked by social ties who share interests or other common characteristics. These groups may or may not share geographic boundaries. Despite being held together by common characteristics, communities are internally diverse. They seldom speak with a single voice. Researchers beginning community work will need to select the initial partners – individuals and community organizations – with which they will work as representatives of the larger community. These initial contacts can be expanded or changed over time to provide a wider picture of the community.

4. A Continuum of Engagement Possibilities (Source: Clinical and Translational Sciences Awards Consortium Community Engagement Key Functions Committee Task Force on the Principles of Community Engagement, 2011.)

5. Degree of Community Involvement Collaborate fully in all aspects of research: e.g., defining study questions, designing methods, implementation, analyzing findings, and disseminating results . More Intensive Assist with implementation of a researcher-designed study: e.g., participant recruitment, data collection, consulting on aspects of study design or data interpretation. Community partners often serve as sub-contractors. Medium Assist in performing discrete steps in a researcher designed study such as recruiting participants. Less Intensive (Source: Community-Engaged Research : A Quick Start Guide ,for Researchers. University of California at san Francisco, 2010) A Continuum of Research Possibilities Not all community engagement activities are related to research. Many activities – especially in the initial stages of community engagement – involve trust building, listening, learning, and capacity building. Once the decision has been made to engage the community in research a range of relationships exist:

6. Community-Engaged Research • Community-engaged research is not a research methodology but is a specific approach for conducting research. • Community engagement is defined by a set of principles that guide research and relationships with the community. This includes respectful access to cultures and communities, community participation and empowerment, coalition-building, and the ethical conduct of research. • Community-engaged research requires partnership development based on mutual respect and a commitment to addressing local health issues. • Community engagement recognizes the knowledge and skills of community organizations and individuals and encourages people to expand upon those skills.

7. Who are Potential Community Partners? • Community members • Individuals or small groups of people who, for example, share a common illness, health or social concern or have an advocacy position on a issue • Community-based organizations • Community-based organizations include, but are not limited to, neighborhood associations, social and service clubs, churches, advocacy organizations, schools, and local county, and state governments. • Community-based clinicians • Community-based clinicians include physicians, nurses, dentists, pharmacists, and others. Community-based clinicians may be included in research studies through practice-based research networks.

8. Translational Research With the launch of the Clinical and Translational Science Award (CTSA) program in 2006, the National Institutes of Health made translational research a key priority. NIH’s emphasis on accelerating basic science discoveries and speeding translation of those discoveries into clinical practice has given rise to three translational blocks: • T1 – Translation from animal studies to humans • T2 – Translation from human clinical studies to patients • T3 – Translation from patients to practice Unfortunately, the translational path from bench to bedside to practice does not currently occur quickly. One study estimates that it takes 17 years on average for new scientific discoveries to enter day-to-day practice. By concentrating on T2 and T3 studies, community-engaged research provides the engine for accelerating the acceptance and application of new knowledge. All breakthrough, no follow through. -- Steven H. Woolf (Washington Post, 2006)

9. The Use of Community Engagement in Translational Research Translation of evidence-based medicine from bench to practice is not simply a matter of perfecting communication to improve the uptake of the latest scientific evidence. Phase 1 and 2 clinical trials attempt to limit variations in study populations to maximize internal validity. These study populations are a good deal more homogeneous than the public at large, and treatment effects are frequently measured as study population means which may mask variation. Clearly, all patients do not benefit equally from a new treatment. Translational research attempts to determine whether evidence acquired from studying homogeneous populations in controlled settings holds in the untidy, heterogeneous world of day-to-day medical practice, and if not, why. Many practice-based and community studies involve bidirectional interaction between communities and academic researchers. Clinical practices and communities members – especially minority populations who have experienced disparities in treatments and outcomes – contribute clinical observations and pose new questions that influence the next phase of study. These studies produce different kinds of evidence that may be of value in diffusion and adoption of evidence-based interventions.

10. 2 Principles of Community Engagement Before Starting a Community Engagement Effort: • Be clear about the purposes or goals of the engagement effort and the populations and/or communities you want to engage. • Become knowledgeable about the community’s culture, economic conditions, social networks, political and power structures, norms and values, demographic trends, history, and experience with efforts by outside groups to engage it in various programs. Learn about the community’s perceptions of those initiating the engagement activities. Source: Clinical and Translational Sciences Awards Consortium Community Engagement Key Functions Committee Task Force on the Principles of Community Engagement, 2011

11. For Engagement to Occur, it is Necessary to… • Go to the community, establish relationships, build trust, work with the formal and informal leadership, and seek commitment from community organizations and leaders to create processes for mobilizing the community. • Remember and accept that collective self-determination is the responsibility and right of all people in a community. No external entity should assume it can bestow on a community the power to act in its own self-interest.

12. For Engagement to Succeed… • All aspects of community engagement must recognize and respect the diversity of the community. • Awareness of the various cultures of a community and other factors affecting diversity must be paramount in planning, designing, and implementing approaches to engaging a community. • Community engagement can only be sustained by identifying and mobilizing community assets and strengths and by developing the community’s capacity and resources to make decisions and take actions. • Investigators who wish to engage a community as well as individuals seeking to effect change must be prepared to release control of actions or interventions to the community and be flexible enough to meet its changing needs. • Community collaboration requires long-term commitment by the engaging investigators and supporting institutions.

13. 3 Challenges to Collaboration Genuine community-engaged research does not come easily or without investment. Years of neglect, distrust, poor communication, and lack of respect has resulted in reluctance in some communities to participate in research activities. It takes time and effort to reach out and meet a community on its own terms. This section will discuss two of the major challenges to conducting community-engaged research. Engaging and maintaining community involvement, and Overcoming differences between and among academics and communities

14. Engaging and Maintaining Community Involvement Community engagement begins with the researcher gaining entry into the community. Entry into a community may be facilitated by a research colleague or a clinician who has worked in and is knowledgeable about the community. This approach, however, merely opens the door; each researcher must establish their own relationship with individuals and organizations within the community. Shared interests among parties set the stage for future collaborations, and mutual trust makes collaborations possible. One strategy for engaging the community in a research project is to involve the community as the ideas for research are being considered, and before questions and procedures are set. This provides an opportunity to draw upon the strengths and assets of the community, and to recognize its priorities in setting the research agenda. It is a trust-building experience, one that reinforces the notion that the project is truly collaborative.

15. Challenges to Engaging and Maintaining Community Involvement Community engagement must be maintained not only during a research project but also between research projects. One way to enhance existing relationships and create long-term partnerships is to establish a community advisory board or “CAB”. CABs play several roles in the research process: • They provide project-related community outreach and education • They offer input on research and project design • They assist in participant recruitment • They help researchers to resolve problems that arise during the project • They provide a visible and credible link between academia and the community Community advisory boards should be composed of individuals representing various parts of the community. Some of the members may belong to community organizations that actively participate in research projects. Memorandums of understanding should be signed between researchers and participating community organizations to enhance communication by spelling out expectations, roles and responsibilities, and governance.

16. Overcoming differences between academics and the community Despite the existence of common aims that unite academic and community partners, differences in culture, language, education, socioeconomic backgrounds, and power can provide substantial challenges to community engagement. Many of these differences can be overcome by patient, respectful, humble, and flexible engagement on behalf of researchers. There is no substitute for spending time in the community. Initially it may be essential for researchers to spend time in the community to agree on common goals that set the foundation for further collaboration. Community visits should be scheduled as frequently as possible. It is important to recognize that community-engaged research is a process of mutual capacity-building in which both sides learn from each other and power is shared. Each side has something unique to offer.

17. 4 Differences Between Traditional & Community-Engaged Research (Adapted from: “Practicing Community-engaged Research,” MA McDonald, Duke Center for Community Research)

18. Recruitment and Retention of Minority Research Participants • To redress historic racial and ethnic disparities in health, growing attention has focused on the inclusion of these previously under-represented populations in clinical and health services research. • Fears of mistreatment, exploitation, surrendering of rights during the informed consent process, or being treated as a “guinea pig” top the list of reasons why minorities are reluctant to participate in research studies. • Community engagement is a common approach to building trust and lowering the barriers to participation. • Through the routine engagement of communities, researchers can also prepare the ground for future studies by explaining the research process and the ethics of research, and describing the value of research to the community and individuals.

19. 5 Working With Community-based Clinicians Practice-based Research Networks (PBRN) • PBRNs are defined by the Agency for Healthcare Research and Quality as "a group of ambulatory practices devoted principally to the primary care of patients. Typically, PBRNs draw on the experience and insight of practicing clinicians to identify and frame research questions whose answers can improve the practice of primary care.“ • By linking these clinician-identified questions with rigorous research methods, the PBRN can produce research findings that are immediately relevant to the clinician and, in theory, more easily assimilated into everyday practice • PBRNs have been used in clinical research for over 30 years, but growth in the number of networks has been most substantial during the last 20 years. • Kansas Providers Engaged in Prevention Research (KPEPR), a PBRN associated with KUMC, is composed of approximately 40 primary care practices located in mostly rural communities across the state.

20. The willingness of community clinicians to participate in a research projects can be greatly influenced by methodological issues. Two issues that may raise concerns are the use of control groups and randomization. Some clinicians are uncomfortable with the idea that some of their patients will receive a potentially valuable intervention and others will be assigned to a non-intervention control group. Bearing this issue in mind, it is useful to discuss the topic of methods with clinicians early in the planning process and, if necessary, to select from among the growing menu of ideas for modifying randomized designs. Design and Methods

21. 6 Why should I participate in community-engaged research? • Community engagement changes the choice/focus of projects and how they are conducted and funded; new opportunities await! • Community collaboration leads to improvements in study designs, tools, interventions, participation, data collection, analysis, and dissemination that is more apt to move research into practice. • Engaged research can lead to new or improved services being made available, policy or funding changes, or transformation of professional practices in all fields of health and medicine. • Academic partners can obtain an enhanced understanding of health issues under study by taking into account the full context of communities (e.g., environment, culture and identity). • Community partners can enhance their knowledge and skills, enabling them to improve their capacity to solve local problems and creating the framework for possible future collaborations with academic partners. • Engagement with communities makes it easier for individuals – especially racial and ethnic minorities – to participate and enrich the outcomes of research.

22. 6 Summary:Should I participate in community-engaged research? Questions to ask before initiating a community-based research project: • Do you need to obtain additional skills or bring on co-investigators to carry out community-engaged research?? • Are you a researcher who is uncomfortable with changing your methods to work with participants? • Does the burden to the community outweigh potential research benefits? • Do you really accept the values and principles of community engaged research? (Source: CCPH CBPR Curriculum, 2006.)

23. Support and Resources How the Community Partnership for Health Can Help You Frontierswas created with numerous community affiliates and partners at KUMC as the institute to carry forward the CTSA grant from NIH. The Community Partnership for Health (CPH) is the organization formed as part of Frontiers to provide a community engagement resource at KUMC. CPH is ready to help you with your community-engaged research projects in a number of ways: Project planning and consultation on community-engaged research. Match-making between community-based research teams and Frontiers researchers. Training and mentoring for inexperienced community-based researchers. Introduction to community organization and institutional contacts. Respectful access to potential community research participants. Review of protocol by the Frontiers Community Council members. CPH staff can be contacted at 913-588-1956, Monday-Friday 9:00 am – 4:00 pm.