Community Engagement Structure and Process

1. Community Engagement Structure and Process Indianapolis, Indiana April 19, 2010 Leslie Wright, MA & Jim Dearing, PhD Kaiser Permanente Colorado, Institute for Health Research

2. CCTSI at University of Colorado President of University of Colorado Affiliated Hospitals: UCH, DH, TCH, NJH, KP, DVAMC Chancellor UC Boulder Chancellor UC Denver Vice Chancellor Of Research UC Boulder Vice Chancellor Of Research UC Denver Vice Chancellor Of Health Affairs UC Denver UC Boulder Schools & Colleges Downtown Denver Campus Schools & Colleges School of Medicine School of Pharmacy College of Nursing School of Dentistry School of Public Health Graduate School Institutions Encompassed by the CCTSI

3. CCTSI Academic Home Chancellor of UCDenver Vice Chancellor of Research Vice Chancellor of Health Affairs CCTSI PI and Director Administrative Director / CFO Admin. Core CCTSl Advisory Council Internal Advisory Committee CCTSI Executive Committee External Advisory Committee Evaluation Center 6 Pillar Programs Translational Informatics Research Informatics Integrated Core (RIIC) • Education & • Training • KL2, TL1; Clinical Faculty Scholars; • CLSC; Career Development Discovery Translation PCIR; Design & Biostatistics; Regulatory Community Engagement &Research Novel Methods & Technology CO-Pilot; NeTT; Novel Methods Child & Maternal Health

4. Community Engagement & Research Organization cctsi.ucdenver.edu/CO-PACT

5. Community Engagement & ResearchPartnership of Academics and Communities for Translation (PACT)

6. PACT Community Liaisons Our Mission is to transform the way communities and researchers work together to design and conduct research by building bridges between health research, clinical practice and community health initiatives to improve the health of the people of Colorado and the Rocky Mountain Region. • Eleven liaisons/seven communities • 5 urban, 2 rural • Live/work in their community • Three employment relationships • Employed by UCD, employed by community organization, independent contractor • 0.5 FTE for each community • One academic and one community advisor • Conference call monthly; quarterly half-day retreats

7. 16 counties • 30,000 miles2 • 145,000 people • 16 hospitals • 56 practices • 135 physicians, PA, NPs • 75-300 miles from UCD • Community Advisory Council • Two CLs: Christin and Susan are both Professional Research Assistants; employed by UCD • HPRN is UCD-based, Christin/Susan live in eastern Colorado. • Work closely with the HPRN Community Advisory Council • CDC grant for translational methods for disseminating information about colon cancer • Teen photo-voice study on healthy eating

8. Center for Native Telehealth and Tele-education • One CL: Crystal is a Health Educator • Centers’ home base is UCD; Crystal is employed by UCD • 10 tribes make up greatest representation of AIAN in Colorado • Focus on integrating academics and the AIAN community to establish open lines of communication, strengthen coalition, foster collaborative research to reduce health disparities

9. Two CLs: • Lucille is CAAH Director of Health Initiatives; Mark is CAAH Program Coordinator • Employed by CAAH • Community-based organization serving African Americans in metro Denver. • Focus: disease prevention and disease management programs; culturally relevant interventions

10. 7200 ft. above sea-levee • Six-county area/4000 sq. mi. • Pop. 46,475 (2005 Census) • Rural area – primarily farming, tourism • 47% Hispanic • 53% non-Hispanic white San Luis Valley • One CL: Reg is Program Director, Robert Chavez is a Professional Research Assistant • Rocky MountainPRC is UCD-based, Reg/Robert employed by UCD, live in San Luis Valley • Conducting studies for over 25 years on various health concerns including diabetes and cardiovascular disease. • Alamosa County Survey - population-based telephone survey conducted in the San Luis Valley - assessing health behaviors, attitudes, concerns; compares results to state and national trends

11. Latinos Using Cardio Health Actions to Reduce Risk • Two CLs: Both independent contractors for the UC Denver LUCHAR community research project • Lorenzo is Health Educator for the Latino/Latino LGBT community; folklorica dance artist • Monica: I think I would best describe myself as a “Culture Broker.” I say this would sum up the various arenas in which I work and participate as a community member. • LUCHAR is a 5 year NHLBI-funded trial whose primary aim is the primary prevention of CVD in Latinos • Work closely with LUCHAR Community Advisory Committee; create culturally sensitive CVD health care interventions and education

12. One CL: Michelle is employed by 2040; her job title is Community Liaison • 2040 Partners for Health is a partnership with 5 northeast Denver communities, UCD, and the Stapleton Foundation • Primary role: to engage community members from the 5 neighborhoods in a partnership with the UCD scientific community to improve collaborative health research studies and outcomes. • Involvement of residents and business owners in partnership with University in translational research • Effective communication mechanisms • CBPR training

13. One CL: Leslie is a Project Manager in KP Colorado Institute for Health Research (IHR) • Kaiser Community = Kaiser Colorado members/patients, clinicians, staff • Connect Kaiser community members who have research questions/ideas to IHR staff or external (e.g. community/university) content experts and resources. • Facilitate research partnerships with • Kaiser as community partner and UCD as research partner • Kaiser (IHR) as research partner and non-Kaiser community entity as partner

14. Why Us? • Personally and professionally already known in our communities… • As supporter, connector, educator, activist, healer, facilitator • To be trustworthy, dedicated, respected, compassionate – especially concerning marginalized people • Skilled at wearing several hats, seeing/understanding many sides, seeing more similarity than difference “I keep talking to the community I am representing, listening to communities – I bring that perspective to this discussion.”

15. Why Us? • Gatekeeper Role: If I facilitate your introduction into the community, I must fully trust you/your team • Loyalty is to the good of the community and to the place I hold in the community • I embrace this role with respect, honor, and humility “It’s a trust thing: they know I am not representing my own interests (they trust me to represent them fully).”

16. Gifts/Opportunities from PACT Community Liaison Role • Bonding with other CLs – extended (culturally and geographically) network of like-minded colleagues/friends • Collegial relationships with and, new accessibility to, highly respected UCD and community leaders/researchers “At the PACT meetings I feel like I am sitting with the cream-of-the-crop in CBPR” • Matchmaker: introduced and later facilitated relationship between community organization and research team; subsequently awarded Partnership Development Grant

17. Gifts/Opportunities from PACT Community Liaison Role • Participation and/or planning of 3 CTSA Immersion Training programs: Urban, Academic, Colorado Urban/Rural • Working session with Colorado Multiple IRB - share experiences/insights on review process; identify challenges/potential solutions for improving the content/process/outcomes of IRB review of community based research. • Facilitate Community/Academic Partnership Community Engagement Training • Conference attendance: • Improving Health in Communities Conference (NIH) • Building Healthy Communities Conference (Colorado Asian Health and Promotion Organization) • Colorado AHEC Engaging Communities in Education and Research

18. Challenges/Lessons Learned • Getting started is hard/takes time • Getting to know each other • Defining our role within the PACT • Aligning our role as PACT CLs and role within our organizations • Still bridging the divide between academic and community members of the PACT Community Engagement Core • Hierarchy between PACT Council and CLs We teach our community academic partnerships that relationship building is an important and required investment of time. We need to practice what we teach!

19. Challenges/Lessons Learned Constructive/Instructive personal conflict: • Concept of having the professional title of Community Liaison, and being paid for it • Will it change my relationship with my community? • I am now expected to be a Liaison for the University too and to bring them into community. Can I trust them - “the Institution”? • What if this CTSA experiment fails? Fails the community? • What if the community chooses not to participate? Where does that leave me in terms of my CL “job”? • Decision: If we don’t try we will never get anywhere • Ego check: I do not single-handedly have the ability, or responsibility, to make or break my community or its relationships. That’s why we are Community.

20. People need to know how much you care before you can teach them whatyou know.