Collaborative research with communities: value added and ...

Collaborative Research with Communities: Value Added and

Challenges Faced

Meredith Minkler, DrPHUniversity of California, Berkeley

The 8th Annual William T. Small, Jr. Keynote Lecture27th Annual Minority Health Conference

UNC-CH School of Public Health, February 24, 2006

Community Based Participatory Research

Participation&

EducationResearch Action

CBPR“a collaborative process that equitably involves all partners in the research process and recognizes the unique strengths that each brings. CBPR begins with a research topic of importance to the community with the aim of combining knowledge and action for social change to improve community health and eliminate health disparities.”

CHSP, 2001; Israel et al, 1998

IOM’s 8 new competency areas• Informatics• Genomics• Cultural competence• Communications• Community based participatory research• Ethics• Policy and law• Global health

Gebbie et al 2001

Roots of CBPR

Kurt Lewin’s action Research, 1940’s, U.S.A.

Alternative research paradigms from 3rd

world, 1970’s (Paulo Freire and others)

CBPR

CBPR Principles

• Participatory• Cooperative• Co-learning process• Systems development & local capacity

building• Empowering• Balances research and action

Israel et al, 1998

RacismRacism is like the elephant in the is like the elephant in the living room. Itliving room. It’’s running through s running through the place, making noises, and the place, making noises, and everyone is trying to sit politely everyone is trying to sit politely and ignore it.and ignore it.””

MakaniMakani ThembaThemba, 1999, 1999

Cultural Humility:

“A life long commitment to self evaluation and self critique” to redress power imbalances and “develop and maintain respectful and dynamic partnerships with communities”

Tervalon & Garcia, 1998

Broadening the bandwidth of validity

Is the research question valid (coming from or important to the community) ?

Is there an interplay between different forms of knowing?

adapted from Bradbury and Reason, 2003

Professional Malady: Terminal Hardening of the Categories

J. MacKinlay

Grandmother Caregiver Study

Minkler & Roe, 1993

Oakland, CA

“What is your income?”

How much money is available to help you in raising this child?

• Depressed or very unhappy 78%• Exhausted even though early in the day 72%• You could not get going 70%• You need a break or you’ll go crazy 58%• Lonely 40%• Appreciated 89%• Meeting your responsibilities 96%

During the past week have you felt…?

Regional Coalition on Grandparents Raising Grandchildren

East Bay, CA

Concerned Citizens of Tillery

North Carolina Hog Population 1970-1996

- Furuseth 1997

“We don’t empower people –we just awaken the power people already have.”

- Gary GrantExecutive Director, CCT

Changing the Vision of Community

Deficit MentalityBundle

ofPathologies

Epidemiology ofStrengths

Community Assets &

Strengths

Source: H. Jack Geiger

Community Assets Map

Inventory of Community Assets

Primary Building Blocks

Secondary Building Blocks

- Indigenous leaders- Talents of residents- Churches- Neighborhood Organizations

- Public schools- Parks- Vacant land

Community Oriented Planning Process

The Healthy Neighborhoods Project (HNP)

Identifying Natural Community Leaders

When you have a problem, who do you go to for advice?

Who do others go to?

When people in the neighborhood have come together around a problem in the past, did a particular individual or group play a key role?

What things do people tell you you’re good at?Eng et al, 1990; Israel, 1985; Sharpe, 2000

Healthy Neighborhoods Project Components

Convening Neighborhood Task ForcesTraining residents as Health Advocates

Assessing neighborhood resources through door-to-door interviewsMapping community assets and problem areasMobilizing residents to develop and implement Action Plans

Some Outcomes

• Evening and night bus service restored in north Richmond

• Improved lighting

• A youth soccer team

• Reactivated tenant association and got a $100,000 grant for a job training program

More Outcomes

• Bucket brigade to measure air quality

• HNP members on local and regional councils and task forces; running for office

• Greater update of new child health insurance program in HNP communities

Measuring Perceived ControlSample Scale Items

• I have control over the decisions that affect my life.

• My community has influence over decisions that affect my life.

• I can influence decisions that affect my community.

• By working together, people in my community can influence decisions that affect the community.

- Israel, et al. 1994

Peggy ShepardExecutive Director, WE ACT

Minkler, 2004

8-Hour Vehicle Count

45 75.5

529

1,403

13.5 28

403

1,064

0200400600800

1,0001,2001,4001,600

Edgecombe Ave. Bus Depot Harlem Hospital Amsterdam Ave.

Trucks

Bus

8-Hour Car and Ped Count

2,302

14,328

18,372

421

16,761

11,246

1,2251,126

02,0004,0006,0008,000

10,00012,00014,00016,00018,00020,000

Edgecombe Ave. Bus Depot Harlem Hospital Amsterdam Ave.

CarsPedestrians

Kinney et al, 2000

WE ACT post card campaign

Outcomes• MTA conversion of

entire fleet to “less dirty diesel”

• EPA initiation of community based air monitoring in northern Manhattan

• Tighter air quality standards

• Adoption of New York State Environmental Justice Policy

Community-Campus Partnerships for HealthAvailable from: http://depts.washington.edu/ccph/commbas.html#Conf

Enhance the connection between public health research and relevant theory-driven interventions(address the why? & so-what? questions)

Social determinants of health

? Health outcomes

Literacy for Environmental Justice/SFDPH

LEG Survey of Products Sold in 11 BV/HP Corner Stores

39%

26%

17%

13%

3%2%

Packaged Food

Alcohol & Cigarettes

Other Beverages

Non-Food Products

Meat

Produce

Economic Incentives• Store Branding

• Free Marketing• Energy Efficient Appliances

• Marketing Assistance

• Group Buying

• Building Improvements

• Personnel Training

• City Recognition

% Change in Salesover 7 Months

Produce 5 15%Alcohol 25 15%

Hurricane Katrina

“Blacks stayed at school on floors … whites stayed in Hope House Plantation.”

- Hurricane Floyd Survivor

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W o r k e r s a n d C o m m u n i t y R e l i e f a n d A i d P r o j e c t [ W C R A P ]

H U R R I C A N E F L O Y D S U R V I V O R S ’ S U M M I T

Insider-Outsider Tensions

• Power dynamics; the “power of authority”of the outsider’s often multiple sources of unspoken privilege (Wallerstein, 1999)

• Conflicting time tables & demands

• Differential reward structures

Challenges Faced by Community Partners as “Outsiders Within”

Constraints of community involvement

• Goal v. reality of extensive participation• Differential costs by gender

Perceived clash between community desires and

“good science”

Tribal Efforts Against Lead

Research Aims

•Assess blood lead levels in children

•Evaluate lay health worker model

Community Action Against Asthma: Detroit, Michigan

Detroit, Michigan

Community Environmental Specialists

Community Action Against Asthma

Jean

Adriana

Ursula

CAAA End of Project Party for Participating Families

• Photos of Party-

Sample IRB Questions• Will the methods used be sensitive and

appropriate to various communities?

• What training or capacity building opportunities will you build in?

• How will you balance scientific rigor and accessibility?

• Are there built-in mechanisms for how unflattering results will be dealt with?

Travers and Flicker 2004, wellesleycentral.com

Dilemmas in the Action Component of CBPR

• Waiting to publish v. taking action

• Reluctance to associate with research that appears connected to broader political agenda

• Funding constraints on policy-level activity

“We don’t do policy – we just educate legislators!”

– Community Partner, Tillery,NC

Instructions to AuthorsEpidemiology

“Opinions or recommendations about public health policy should be reserved for editorials, letters, or commentary, not presented as the conclusions of scientific research.”

““DonDon’’t tell us how much you t tell us how much you know until you show us how know until you show us how much you caremuch you care””

AnonymousAnonymous