Activity: Building Trust in CBPR Partnerships by Overcoming Obstacles

1. Activity: Building Trust in CBPR Partnerships by Overcoming Obstacles • Please take a piece of paper and write down your answer to the question that applies to you: • If you are a community partner: What is one challenge or obstacle that you face in partnering with the university?  • If you are faculty, staff or student:  What is one challenge or obstacle that you face in partnering with communities? • Crumple up the piece of paper and throw it into the space at the front of the room. 

2. Activity: Building Trust in CBPR Partnerships by Overcoming Obstacles Group debrief: What did participants observed about the way the two people interacted with each other?  What indicated whether there was trust or not?

3. WHAT IS AND WHAT ISN’T CBPR?ETHICAL PRINCIPLES OF COMMUNITY-ACADEMIC PARTNERED RESEARCH Keyonna King, DrPH, MA Assistant Professor Center for Reducing Health Disparities Department of Health Promotion College of Public Health

4. Presentation Objectives: • To provide an overview of the community-based participatory research (CBPR) approach. • To discuss the ethical principles of using the CBPR approach. • To provide a real-world application of the ethical principles. • To describe challenges and solutions to implementing CBPR and partnership development

5. Acknowledgements: • Arleen Brown, MD, PhD • Paul Estabrooks, PhD • Susanne Montgomery, PhD, MS, MPH • Keith C. Norris, MD, PhD • Ms. Loretta Jones, ThD & Healthy African American Families II • Ms. D’Ann Morris

6. Community-Engaged Research • National Institute of Health has adopted the term “Community-Engaged Research” (CEnR) which involves collaboration to improve health regardless of specific type of engagement. • This does not necessarily mean less engagement but that the collaboration may not be based on equality or equity. Source: National Center for Minority Health and Health Disparities, National Institutes of Health, US Department of Health and Human Services

7. Community Engagement Approaches

9. Community-Engaged Research Community-Based Research Practice-Based Research This Photo by Unknown Author is licensed under CC BY-SA CBPR/CPPR

10. Community Based Participatory Research (CBPR) • Provide a means of collaboration between academia and the community in examining key community issues, and developing appropriate interventions to address the issues (Israel, Eng, Schulz, & Parker, 2005) • Participatory research framework blending evidence-based research with community-based knowledge and practice (Jones, Wells, Norris, Meade, & Koegel, 2009)

11. Community Based Participatory Research (CBPR) • Most well known and evidenced-based public health approach used to address health-related issues • Intent: translate research so that community can reap the benefits of the research about them! • “Community-Partnered Participatory Research” (CPPR) to emphasize partnering with communities rather than merely possessing a location within the community to conduct research • Community is involved in ALL phases of the project including definition of research questions and methods

12. CBPR/CPPR: What is it? • Ideally, community members work together with the research team in every phase of the project: • Identifying the problem to be investigated • Defining the research question • Developing the protocol • Conducting the study • Analyzing the data and disseminating results Adapted from Blumenthal et al., “Community Based Participatory Health Research

13. CBPR/CPPR: What is it? Characteristics: • Is an approach, not a research method or design • Focus on population • Takes place in the community setting not in a laboratory or hospital/clinic setting • Fully partnering with the community • Conducts research with the community not on a community or in a community • Influences outcomes at the community level Adapted from Blumenthal et al., “Community Based Participatory Health Research

14. CBPR/CPPR: What isn’t it? Communities should be seen as PARTNERS. Not as: • Laboratories – reduce community to status of being guinea pigs (Research) • Classrooms – reduce to status of being props for a teaching exercise (Teaching) • Charity cases – reduced to status of being unable to take care of themselves (Service) Adapted from Blumenthal et al., “Community Based Participatory Health Research

15. Community Involvement in Research Comparison in community participation percentage in different parts of research processes for 8 completed intervention studies. Salimi Y, Shahandeh K et al., Int J Prev Med. 2012 June; 3(6): 386-393.

16. Source: Adapted from Ohio Clinical & Translational Research Institute

17. Adapted from Blumenthal et al., “Community Based Participatory Health Research

18. The Big 9 Principles of CBPR: • Recognizes community as an entity. • Builds on community assessments. • Facilitates collaborative partnerships. • Integrates results into action for community change. • Recognizes inequalities and differences. • Involves a cyclical and iterative process. • Addresses social determinants of health. • Disseminates findings. • Involves a long-term commitment. Adapted from Blumenthal et al., “Community Based Participatory Health Research Israel BA, Schulz AJ, Parker EA, Becker AB, Allen AJ, Guzman JR. Critical issues in developing and following community-based participatory research principles. In M. Minkler, N. Wallerstein (eds.), Community-Based Participatory Research for Health. San Francisco: Jossey-Bass, 2003, pp. 56-73.

19. 1. Recognizes community as an entity • There is a common characteristic (communality) among members Example: Healthy Community Neighborhood Initiative • Some of the community and academic partners on the team had a previous working relationship from other projects. • All team members understood the disparities in the South Los Angeles community and the need to address the health issues Brown et al., The Healthy Community Neighborhood Initiative: Rationale and design. Ethn Dis. 2016; 26(1): 123-132 King KM, Morris D, Jones L, Lucas-Wright A, Jones F, del Pino H, Porter C, Vargas R, Kahn K, Brown AF, Norris KC, HCNI Study Group. The Los Angeles Healthy Community Neighborhood Initiative: A Ten Year Experience in Building and Sustaining a Community-Academic Partnership. J Comm Med Pub Health Care. 2015; 2(2):007

20. 2. Builds on community assessments • Project considers community’s needs and problems but also strengths and resources Example: Healthy Community Neighborhood Initiative • By having community at the table, we were able to identify the needs, problems AND strengths and resources. • Developed a community resource guide to identify the strengths and resources in the community. • Resource guide was developed in partnership. • Community identified the resources (e.g. grocery stores, clinics, churches, parks, food pantries, etc.) • Academic and community designed guide and kept it up to date annually • Resource guide was disseminated widely in the community. Brown et al., The Healthy Community Neighborhood Initiative: Rationale and design. Ethn Dis. 2016; 26(1): 123-132 King KM, Morris D, Jones L, Lucas-Wright A, Jones F, del Pino H, Porter C, Vargas R, Kahn K, Brown AF, Norris KC, HCNI Study Group. The Los Angeles Healthy Community Neighborhood Initiative: A Ten Year Experience in Building and Sustaining a Community-Academic Partnership. J Comm Med Pub Health Care. 2015; 2(2):007

21. 3. Facilitates collaborative partnerships • Communities share control over all phases of the project Example: Healthy Community Neighborhood Initiative • From the beginning, community was part of every phase of the project. • Created an executive leadership team co-chaired by one community and one academic partner (Ms. Loretta and Dr. Brown) • Created a presentation and publication (P&P) committee so any use of data from the project must be approved by the committee (made up of community and academic partners) • Community-academic pairs went into community to collect the data (survey and mini-physical exam) Brown et al., The Healthy Community Neighborhood Initiative: Rationale and design. Ethn Dis. 2016; 26(1): 123-132 King KM, Morris D, Jones L, Lucas-Wright A, Jones F, del Pino H, Porter C, Vargas R, Kahn K, Brown AF, Norris KC, HCNI Study Group. The Los Angeles Healthy Community Neighborhood Initiative: A Ten Year Experience in Building and Sustaining a Community-Academic Partnership. J Comm Med Pub Health Care. 2015; 2(2):007

22. 4. Integrates results into action for community change • Project produces a positive measurable impact in the community Example: Healthy Community Neighborhood Initiative • Results from the project led to creation of: • Community health forums • Programs focused on healthy eating (e.g. grocery shopping tours) • Physical activity (e.g. improvements to local parks) • Improved health screening at local safety net clinics Brown et al., The Healthy Community Neighborhood Initiative: Rationale and design. Ethn Dis. 2016; 26(1): 123-132 King KM, Morris D, Jones L, Lucas-Wright A, Jones F, del Pino H, Porter C, Vargas R, Kahn K, Brown AF, Norris KC, HCNI Study Group. The Los Angeles Healthy Community Neighborhood Initiative: A Ten Year Experience in Building and Sustaining a Community-Academic Partnership. J Comm Med Pub Health Care. 2015; 2(2):007

23. 5. Recognizes inequalities and differences • Members of the team learn from each-other and build on their strengths and weaknesses Example: Healthy Community Neighborhood Initiative • Began most meetings discussing any events that positively (and adversely) affected the community • Understanding this impact allowed us to consider how our research could be influenced • Community partners would present on topics to teach academic partners about cultural humility, sensitivity, competency • Academic partners would involve community in manuscript writing, data analysis and would bring in presenters to discuss these activities • Evaluation of the partnership provided opportunity to discuss challenges/barriers and advantages of working together • When there was tension between individuals on the team, we would utilize the meetings to address it before moving forward. Brown et al., The Healthy Community Neighborhood Initiative: Rationale and design. Ethn Dis. 2016; 26(1): 123-132 King KM, Morris D, Jones L, Lucas-Wright A, Jones F, del Pino H, Porter C, Vargas R, Kahn K, Brown AF, Norris KC, HCNI Study Group. The Los Angeles Healthy Community Neighborhood Initiative: A Ten Year Experience in Building and Sustaining a Community-Academic Partnership. J Comm Med Pub Health Care. 2015; 2(2):007

24. 6. Involves cyclical and iterative process • Project begins with partnership development, includes all the stages of the research and mechanisms for sustainability, and reinforces the partnership Example: Healthy Community Neighborhood Initiative • Advantage: some partners had relationships from previous project • Community and academic partners worked together to identify needs • Began bringing other community and academic partners to the table with the same/similar concerns • Over the project, some team members “got on and off the bus, and back on again.” • Partnership has been built and sustained over 10 years! Brown et al., The Healthy Community Neighborhood Initiative: Rationale and design. Ethn Dis. 2016; 26(1): 123-132 King KM, Morris D, Jones L, Lucas-Wright A, Jones F, del Pino H, Porter C, Vargas R, Kahn K, Brown AF, Norris KC, HCNI Study Group. The Los Angeles Healthy Community Neighborhood Initiative: A Ten Year Experience in Building and Sustaining a Community-Academic Partnership. J Comm Med Pub Health Care. 2015; 2(2):007

25. 7. Addresses social determinants of health • Project focuses on physical, mental and social well-being and also on economic, cultural, historical and political factors Example: Healthy Community Neighborhood Initiative • Project focused on cardiovascular disease (priority health need), but all other factors were also assessed to examine the problem from a holistic viewpoint • Historical and political factors were discussed and addressed at team meetings and incorporated into our data collection procedures Brown et al., The Healthy Community Neighborhood Initiative: Rationale and design. Ethn Dis. 2016; 26(1): 123-132 King KM, Morris D, Jones L, Lucas-Wright A, Jones F, del Pino H, Porter C, Vargas R, Kahn K, Brown AF, Norris KC, HCNI Study Group. The Los Angeles Healthy Community Neighborhood Initiative: A Ten Year Experience in Building and Sustaining a Community-Academic Partnership. J Comm Med Pub Health Care. 2015; 2(2):007

26. 8. Disseminates findings • Results are shared with community in understandable language and are published with community involvement Example: Healthy Community Neighborhood Initiative • Results from the study were decided upon by the team • All dissemination ideas (posters, presentations, and manuscripts) were approved by the P&P committee • Results were printed in local newspapers, team members conduct radio interviews, presented at community health forums, townhalls, etc. Brown et al., The Healthy Community Neighborhood Initiative: Rationale and design. Ethn Dis. 2016; 26(1): 123-132 King KM, Morris D, Jones L, Lucas-Wright A, Jones F, del Pino H, Porter C, Vargas R, Kahn K, Brown AF, Norris KC, HCNI Study Group. The Los Angeles Healthy Community Neighborhood Initiative: A Ten Year Experience in Building and Sustaining a Community-Academic Partnership. J Comm Med Pub Health Care. 2015; 2(2):007

27. 9. Involves a long-term commitment • Partnership continues after grants have come to an end and look for new funding, if necessary Example: Healthy Community Neighborhood Initiative • This was critical to the sustainability of the partnership and project • Attended community and academic events showing support for our partners • Team members were devoted to the project • When no funding was available time, efforts, and materials were in-kind • Went several years without funding Brown et al., The Healthy Community Neighborhood Initiative: Rationale and design. Ethn Dis. 2016; 26(1): 123-132 King KM, Morris D, Jones L, Lucas-Wright A, Jones F, del Pino H, Porter C, Vargas R, Kahn K, Brown AF, Norris KC, HCNI Study Group. The Los Angeles Healthy Community Neighborhood Initiative: A Ten Year Experience in Building and Sustaining a Community-Academic Partnership. J Comm Med Pub Health Care. 2015; 2(2):007

28. Challenges to Implementing CBPR/CPPR

29. Challenges to Implementing CBPR/CPPR (cont’d) 4 7 5 6

30. Challenges with Developing Partnerships • Lack of trust and respect – institutional histories* • Inequitable distribution of power and control • Conflicts associated with differences in perspective, priorities, assumptions, and language • Conflicts over funding • Promotion and tenure for academics Israel BA, Schulz AJ, Parker EA, Becker AB. Review of community-based research: Assessing partnership approaches to improve public health. Annu Rev Public Health. 1998;19:173-202. *Christopher S, Watts V, Knows His Gun McCormick A, Young S. Building and maintaining trust in a community-based participatory research partnership. American Journal of Public Health. 2008;98(8):1398-1406. **Ritchie SD, Jo Wabano M, Beardy J, et al. Community-based participatory research with indigenous communities: The proximity paradox. Health Place. 2013;24:183-189

31. Mitigating the Challenges King KM, Morris D, Jones L, Lucas-Wright A, Jones F, del Pino H, Porter C, Vargas R, Kahn K, Brown AF, Norris KC, HCNI Study Group. The Los Angeles Healthy Community Neighborhood Initiative: A Ten Year Experience in Building and Sustaining a Community-Academic Partnership. J Comm Med Pub Health Care. 2015; 2(2):007

32. THANK YOU! Keyonna King, DrPH, MA • Email: Keyonna.king@unmc.edu Center for Reducing Health Disparities • Website: https://unmc.edu/publichealth/crhd/

34. Differences between research approaches

35. Community-Based Participatory Research (CBPR) 9 Principles of CBPR: • Recognizes community as an entity: there is a common characteristic (communality) among members • Builds on community assessments: project considers community’s needs and problems but also strengths and resources • Facilitates collaborative partnerships: communities share control over all phases of the project • Integrates results into action for community change: project produces a positive measurable impact in the community • Recognizes inequalities and differences: members of the team learn from each-other and build on their strengths and weaknesses

36. Community-Based Participatory Research (CBPR) 9 Principles of CBPR (CONT’D): • Involves a cyclical and iterative process: the project begins with partnership development, includes all the stages of the research and mechanisms for sustainability, and reinforces the partnership • Addresses social determinants of health: project focuses on physical, mental and social well-being and also on economic, cultural, historical and political factors • Disseminates findings: Results are shared with community in understandable language and are published with community involvement • Involves a long-term commitment: partnership continues after grants have come to an end and look for new funding, if necessary

37. How to build community-academic partnerships

38. How to Build Full Partnerships • Partners agree on mission, goals, and outcomes • Partners have mutual trust, respect, and commitment • Partners focus on identified strengths and needs • Partners have clear communications and transparency in decision-making

39. How to Build Full Partnerships (cont’d) • Partners use feedback to, among, and from all of their members • Partners have a governance structure to define roles, norms and process of how to proceed • Partners have relationships with local leaders and funding agencies • Partners use existing structures (churches, schools, worksites) to incorporate solutions into their mission

40. Activity: Building Trust in CBPR Partnerships by Overcoming Obstacles This exercise is designed to take 45-60 minutes.   You will need one sheet of paper per person and a scarf or sash to use as a blindfold. Provide these instructions to participants: Please take a piece of paper and write down your answer to the question that applies to you If you are a community partner: What is one challenge or obstacle that you face in partnering with the university?  [substitute “with institutions,” “with the health department” or other wording as appropriate for the group] If you are faculty, staff or student:  What is one challenge or obstacle that you face in partnering with communities? Then, instruct each participant to crumple up the piece of paper and throw it into the space at the front of the room.  Ask for two volunteers – ideally a community and institutional partnership pair that have had some history of working together.  Ask if either person would mind being blind-folded for the purpose of the exercise.  Blind-fold one person and ask the other person to help the blind-folded person “navigate through the obstacles” posed by the crumpled pieces of paper only by talking to and not physically touching the blind-folded person.  After the blind-folded person has successfully navigated the obstacles, take the blind-fold off and debrief on the exercise as a group: what did participants observed about the way the two people interacted with each other?  What indicated whether there was trust or not? After debriefing, open the pieces of crumpled paper and either: As a large group, talk through each challenge or obstacle one-by-one, or group them together in categories for discussion; or Divide participants in small groups and give each one or several challenges or obstacles to discuss and develop recommendations to report back to the large group.