cctsi.ucdenver.edu community engagement structure and process indianapolis, indiana april 19, 2010...

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Community Engagement Structure and Process

Indianapolis, IndianaApril 19, 2010

Leslie Wright, MA & Jim Dearing, PhD Kaiser Permanente Colorado, Institute for Health Research

cctsi.ucdenver.edu

CCTSI at University of Colorado

School ofMedicine

School ofPharmacy

College ofNursing

School ofDentistry

School ofPublicHealth

GraduateSchool

ChancellorUC Denver

Vice ChancellorOf ResearchUC Denver

President of University of Colorado

DowntownDenverCampus

Schools & Colleges

Vice ChancellorOf Health Affairs

UC Denver

ChancellorUC Boulder

Vice ChancellorOf ResearchUC Boulder

Institutions Encompassed by the CCTSI

Affiliated Hospitals:UCH, DH, TCH, NJH,

KP, DVAMC

UC BoulderSchools & Colleges

cctsi.ucdenver.edu

CCTSI Academic Home

Education & Training

KL2, TL1; Clinical Faculty Scholars;

CLSC; Career Development

DiscoveryTranslation

PCIR; Design &Biostatistics;Regulatory

CommunityEngagement &

Research

Novel Methods& Technology

CO-Pilot;NeTT;

Novel Methods

Child & Maternal Health

Translational Informatics

Research Informatics

Integrated Core (RIIC)

Vice Chancellor of Research

Administrative Director / CFO

Vice Chancellor of Health Affairs

External Advisory Committee Evaluation Center

CCTSl AdvisoryCouncil Internal Advisory

Committee

Chancellor of UCDenver

CCTSI PI and Director

CCTSI Executive Committee

6 Pillar Programs

Admin. Core

cctsi.ucdenver.edu

Community Engagement & Research OrganizationCommunity Engagement and Research

Andrew Kramer, MD

Scientific StaffDirector: Debbi Main, UCD Downtown

Jim Dearing, Kaiser Permanente

Carolyn Gissendanner Borwick, UCD Medicine

Julie Marshall, UCD School of Public Health

Ruth O’Brien, UCD Nursing

Charlene Ortiz, UCD School of Public Health

Jack Westfall, UCD Family Medicine

Julie Slater, UCD Medicine

Sara Miller, Executive Director, CFPHE

10 Community Liaisons

6 PACT Council Committees

Chair: Larry Green, UCD Family MedicineVice Chair: Maret Felzien, High Plains Rancher/Teacher

San Luis Valley Population

PACT Council

(18)

American Indian/Alaska Native (AI/AN) Programs

High Plains Research Network

Kaiser Patient/Provider

PopulationStapleton 2040

LUCHAR –Latinos Using Cardio Health

Actions to Reduce Risk

American Academy of Family Physicians National Research

Network

Building Investigative Practices for Better Health

Outcomes

Catholic Churches

Colorado Children’s Healthcare Access

Program

Colorado Pharmacy Practice Education & Research Network Colorado Research

Network

Denver Health Medical Center

Patient/ Provider Population

Denver Metro Emergency Network

National Jewish Medical & Research Center Patient/ Provider

Population

National Surgical Quality Improvement Program (NSQIP)

Population-based Palliative Care

Research Network (PoPCRN)

Rocky Mountain Altitude Network

Center for African American Health

SNOCAP Members

Colorado Cardiovascular Outcomes Research (CCOR)

Nurse Family Partnership


PACT Council

(18)

American Indian/Alaska Native (AI/AN) Programs



PopulationStapleton 2040

LUCHAR –Latinos Using Cardio Health

Actions to Reduce Risk

American Academy of Family Physicians National Research

Network


Outcomes

Catholic Churches


Program

Colorado Pharmacy Practice Education & Research Network Colorado Research

Network




National Jewish Medical & Research Center Patient/ Provider

Population






SNOCAP Members



cctsi.ucdenver.edu/CO-PACT

cctsi.ucdenver.edu

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


PACT Council

American Indian/Alaska Native

(AI/AN) Programs



Population

Stapleton 2040

LUCHAR – Latinos Using Cardio

Health Actions to Reduce Risk

American Academy of

Family Physicians National Research

Network


Outcomes

Catholic Churches


Program

Colorado Pharmacy Practice

Education & Research Network

Colorado Research Network




National Jewish Medical & Research Center






SNOCAP Members




cctsi.ucdenver.edu

PACT Community LiaisonsOur 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

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HighPlainsResearchNetwork

•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

•16 counties•30,000 miles2

•145,000 people•16 hospitals•56 practices•135 physicians, PA, NPs•75-300 miles from UCD•Community Advisory Council

cctsi.ucdenver.edu

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

cctsi.ucdenver.edu

•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

cctsi.ucdenver.edu

•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

•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

cctsi.ucdenver.edu

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

cctsi.ucdenver.edu

•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

cctsi.ucdenver.edu

•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

cctsi.ucdenver.edu

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.”

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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).”

cctsi.ucdenver.edu

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

cctsi.ucdenver.edu

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

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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!

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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.

cctsi.ucdenver.edu

People need to know how much you care

before you can teach them

what you know.

HighPlainsResearchNetwork

cctsi.ucdenver.edu community engagement structure and process indianapolis, indiana april 19, 2010...

Documents

health research slide

community health initiatives

community organization

aian community

collaborative research

conduct research

health disparities

community engagement