CTSA Community by jolinmilioncherie


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

                  CCTSI at University of Colorado
                                                  President of
                                              University of Colorado

                                                                                    Affiliated Hospitals:
                                                                                   UCH, DH, TCH, NJH,
  Chancellor                                        Chancellor
                                                                                         KP, DVAMC
  UC Boulder                                        UC Denver

Vice Chancellor                                   Vice Chancellor           Vice Chancellor
 Of Research                                       Of Research              Of Health Affairs
  UC Boulder                                        UC Denver                 UC Denver

   UC Boulder        Downtown
   Schools &                                                                      School of
                      Denver     School of   School of   College of   School of               Graduate
    Colleges                                                                       Public
                      Campus     Medicine    Pharmacy     Nursing     Dentistry                School
                     Schools &

                     Institutions Encompassed by the CCTSI

                               CCTSI Academic Home
                                                         Chancellor of
                                       Vice Chancellor                   Vice Chancellor
                                         of Research                     of Health Affairs
                                                         CCTSI PI and              Administrative
                                                                                                         Admin. Core
                                                           Director                Director / CFO
                          CCTSl Advisory
                             Council                                               Internal Advisory
                                                     CCTSI Executive
                        External Advisory
                           Committee                                               Evaluation Center

                                                  6 Pillar Programs

 Education &          Discovery              Community            Novel Methods   Child &                  Translational
  Training           Translation            Engagement &          & Technology Maternal Health              Informatics
KL2, TL1; Clinical   PCIR; Design &           Research               CO-Pilot;                                 Research
Faculty Scholars;     Biostatistics;                                  NeTT;                                   Informatics
                       Regulatory                                  Novel Methods                            Integrated Core
 CLSC; Career

Community Engagement & Research Organization
                                                                                Community Engagement and Research
                                                                                                                         Andrew Kramer, MD

                                     SNOCAP Members                                        Rocky Mountain
                                                                                                                                                                                 Scientific Staff
                                                                                           Altitude Network

                                               Colorado Pharmacy
                                               Practice Education &
                                                Research Network
                                                                         High Plains
                                                                      Research Network
                                                                                               Colorado Research
                                                                                                                                                                       Director: Debbi Main, UCD Downtown
                         Investigative                                                             Network
                          Practices for
                         Better Health
                                                                                                                   American Indian/Alaska
                                                                                                                   Native (AI/AN) Programs

         Colorado Children’s
          Healthcare Access
                                                                                                                                                                                  Jim Dearing, Kaiser Permanente

                                                                                                                               National Surgical Quality Improvement

  American Academy
  of Family Physicians
   National Research
                                                                                                                                         Program (NSQIP)
                                                                                                                                                                            Carolyn Gissendanner Borwick, UCD Medicine
                                                                                                                                        Nurse Family Partnership

                                                                                                                                                                             Julie Marshall, UCD School of Public Health
                                                                        PACT                                                             Kaiser
Stapleton 2040                                                                                                                      Patient/Provider
                                                                                                                                                                                    Ruth O’Brien, UCD Nursing
  Denver Metro
    Network                                                                                                                          Colorado Cardiovascular
                                                                                                                                    Outcomes Research (CCOR)
                                                                                                                                                                            Charlene Ortiz, UCD School of Public Health
          Denver Health
          Medical Center
         Patient/Provider                                                                                                         National Jewish Medical &
            Population                                                                                                         Research Center Patient/Provider
                                                                                                                                                                                Jack Westfall, UCD Family Medicine
                 LUCHAR –
                                                                                                                   Center for African
               Latinos Using
               Cardio Health
              Actions to Reduce
                                                                                                                   American Health
                                                                                                                                                                                     Julie Slater, UCD Medicine
                                               Population-based                          Catholic Churches
                                                Palliative Care
                                               Research Network       San Luis Valley
                                                   (PoPCRN)             Population
                                                                                                                                                                               Sara Miller, Executive Director, CFPHE

           Chair: Larry Green, UCD Family Medicine
     Vice Chair: Maret Felzien, High Plains Rancher/Teacher
                                             6 PACT Council Committees

                                                       10 Community Liaisons

         Community Engagement & Research
Partnership of Academics and Communities for Translation (PACT)
                                  SNOCAP Members                               Rocky Mountain
                                                                               Altitude Network
                                            Colorado         High Plains
                                        Pharmacy Practice
                          Building        Education &                            Colorado Research
                        Investigative   Research Network      Network                Network
                        Practices for
                        Better Health
                          Outcomes                                                                          American
                                                                                                      Indian/Alaska Native
            Colorado Children’s                                                                         (AI/AN) Programs
             Healthcare Access

                                                                                                                  National Surgical Quality
             American                                                                                           Improvement Program (NSQIP)
           Academy of
         Family Physicians
         National Research                                                                                           Nurse Family Partnership

       Stapleton 2040
                                                              PACT                                                        Kaiser
                                                             Council                                                   Population

        Denver Metro
                                                                                                                     Colorado Cardiovascular
                                                                                                                    Outcomes Research (CCOR)

             Denver Health
             Medical Center
                                                                                                                 National Jewish Medical &
                                                                                                                      Research Center
                                                                                                                Patient/Provider Population

                 LUCHAR – Latinos
                   Using Cardio                                                                       Center for African
                  Health Actions to                                                                   American Health
                    Reduce Risk

                                          Population-based                        Catholic Churches
                                           Palliative Care   San Luis Valley
                                          Research Network     Population

           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
       • 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
   High                                  •16 counties
                                         •30,000 miles2
   Plains                                •145,000 people
                                         •16 hospitals
   Research                              •56 practices
   Network                               •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
•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
                                        Center for Native Telehealth
                                            and Tele-education

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

•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

                                                  •7200 ft. above sea-levee
                                                  •Six-county area/4000 sq. mi.
                                                  •Pop. 46,475 (2005 Census)
                                                  •Rural area – primarily
                                                  farming, tourism
                                                  •47% Hispanic
San Luis Valley                                   •53% non-Hispanic white

•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

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

•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

•One CL: Leslie is a Project Manager in KP Colorado Institute for
Health Research (IHR)
•Kaiser Community = Kaiser Colorado members/patients, clinicians,
•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
                     Why Us?
• Personally and professionally already known in our
   – As supporter, connector, educator, activist, healer,
   – To be trustworthy, dedicated, respected,
     compassionate – especially concerning marginalized
   – 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.”

                   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

“It’s a trust thing: they know I am not
  representing my own interests (they trust me
  to represent them fully).”
                  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

  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

                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!

             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.


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


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