Introduction to Community Based Participatory Research

Introduction to Community Based

Participatory Research

Karen Hacker, MD, MPH

Institute for Community Health

Introduction to Clinical Investigation

October 5, 2011

http://catalyst.harvard.edu

“If you think you’re too

small to be effective, you

have never been in bed

with a mosquito.”

Bette Reese

Community Based Participatory Research

• CBPR on the continuum of CEnR

• Principals and Foundations of CBPR research

• Examples of CBPR studies

• Available resources

What is Communtiy Engaged

Research (CEnR)?

• “A fundamental premise of community-engaged research is that community-based organizations have credible, legitimate, and intimate understandings of the assets, concerns, values and activities of their constituents and communities”.

COMMUNITY-ENGAGED RESEARCH WITH COMMUNITY-BASED AGENCIES & ORGANIZATIONS: A RESOURCE MANUAL FOR RESEARCHERS.

CTSI at UCSF

The Translational Research Continuum

Basic

Biomedical

Discovery

Clinical

Efficacy

Clinical

Effectiveness Clinical Practice

T1

What works under

controlled conditions? (Up to phase III trials)

How can we

change practice? (Dissemination and

Implementation Research)

What is the effect

on population health? (Outcomes research)

T2

T3

T4

“Bench” “Bedside”

Community

Practices Community

Practices

What works in

real world settings? (e.g., Comparative

Effectiveness

Research)

CEnR

VCU Center for Clinical and

Translational Research 5

Community Engaged Research

Continuum (clinical & social/behavioral)

Investigator-

Driven

Research

Community-

Driven

Research

Community

Based

Participatory

Research

Community

Placed

Research

Community

Based

Research

Less

Community

involvement

Complete

Community

involvement

VCU Center for Clinical and Translational Research

The Spectrum of Engagement

• Low engagement – Intercepting potential participants on the street – Conducting random phone sampling

• Moderate engagement

– Solicitation of a Community Based Organization (CBO) to assist in implementing a study design

– A CBO provides the setting for a partnering clinic staff member to draw blood or do another lab test on-site

• High engagement

– Community advisory board – Community and researcher act in partnership to jointly

explore a problem

What is CBPR?

“Community-based participatory research (CBPR) is a collaborative approach to research that combines methods of inquiry with community capacity-building strategies to bridge the gap between knowledge produced through research and what is practiced in communities to improve health.”

AHRQ Community Based Participatory Research: Assessing the Evidence 2004

Traditional vs. Community Engaged Research

Traditional Community-Engaged CBPR

Research

Objective

Based on epidemiologic

data & funding priorities

Community input in

identifying locally relevant issues

Full participation of

community in identifying issues of greatest

importance

Study Design Design based entirely on

scientific rigor and feasibility

Researchers work with

community to ensure study

design is culturally acceptable

Community intimately

involved with study design

Instrument

Design

Instruments adopted/adapted from other studies. Tested chiefly w/psychometric analytic methods.

Instruments adopted from other studies & tested/adapted to fit local populations

Instruments developed with

community input and tested in similar

populations

Data

Collection

Conducted by academic

researchers or individuals

w/no connection to the

community

Community members

involved in some aspects of data

collection

Conducted by members of the

community, to the extent possible based on

available skill sets. Focus on capacity building.

Dissemination Results published in

peer-reviewed academic

journals.

Results disseminated in

community venues as well as

peer-reviewed journals

Community members assist academic researchers to identify appropriate venues to disseminate results (public meetings, radio, etc.) in a timely manner & community members involved in dissemination. Results also published in peer-reviewed journals.

Mary Anne McDonald, Duke Center for Community Research, Duke University School of Medicine,

2007

Why engage in CBPR?

• “Traditional” research can be limited

• Despite research in key areas, health disparities persist.

• Community members want research to address their needs

• Community involvement can lead to innovation

• Research findings can be applied directly to develop interventions specific for communities

9

CBPR Principles

• Facilitate collaborative, equitable partnerships in all phases of research

• Integrate & achieve balance between research and action for benefit of all partners

• Recognize community as unit of identity • Build on community strengths/ resources • Promote co-learning and capacity building among all

partners • Involves a long-term process and commitment • Emphasize local relevance of public health problems and

multiple determinants of health • Disseminate findings and knowledge gained to all partners

and involve all partners in that process • Involves systems development through a cyclical &

iterative process

Israel, Schulz, Parker, Becker, Allen, Guzman, 2003 as presented by Dr. Karen Emmons on 11/13/03

Action Research

Participatory

Research

Community

Organizing

Environmental

Justice

Feminist Theory

Community-

oriented Care

Historical Roots of CBPR

QUESTION

What do you

want to know?

METHOD

How will you

answer question? DATA

COLLECTION

Using method to

answer question

ANALYSIS

What do the

answers mean?

ACTION

How will I use

the answers? Dissemination

Who do I tell

the answers to?

The Research Process

Institute for Community Health 2006

Capacity Building

Different CBPR Approaches

• Youth suicide and overdose • Hacker K, Collins J, Gross-Young L, Almeida S, Burke, N Coping with Youth Suicide

and Overdose. Improving child asthma Crisis 2008; Vol. 29(2):86–95

• Asthma; A community health worker intervention

• Parker EA, Israel BA, Robins TG, Mentz G, Xihong Lin, Brakefield-Caldwell W, Ramirez E, Edgren KK, Salinas M, Lewis TC. Evaluation of Community Action Against Asthma: a community health worker intervention to improve children's asthma-related health by reducing household environmental triggers for asthma. Health Educ Behav. 2008 Jun;35(3):376-95.

• Healthy Public Housing Initiative • Levy JI, Brugge D, Peters JL, Clougherty JE, Saddler, SS. A Community-based

participatory research study of multifaceted in-home environmental interventions for pediatric asthmatics in public housing. Soc Sci & Medicine 2006;63:2191-2203

CBPR project steps

1. Define the community

2. Engagement

3. Research Question

4. Design/Hypothesis testing

5. Conduct

6. Analysis/Results

7. Dissemination/Action

Identifying the Issue

15

Step 1:

Define your “Community?”

• A group of people linked by social ties who share common perspectives or interests, and may also share a geographic location (MacQueen et al)

• Examples of communities

– Boston residents

– Brazilian immigrants

– Primary care physicians

– And many others….

• Communities are not homogeneous and seldom speak with a single voice

Identifying the Issue

• Who identifies problem of interest?

– Community identifies problem and approaches investigator for help

– Researcher has area of interest and approaches community to partner with them

Step 2: Engagement

• Meet with the identified group • Identify interested partners

• Come out of the Ivory Tower

• Get to know each other and the community

• LISTEN

• Questions to ask

– What issues are important to the community?

– Do your interests and theirs coincide?

– Do they have priorities for which they need help?

– How do your skills enhance their efforts?

Partnerships Require:

• Trust

• Commitment

• Shared decision making/ownership

• Empowerment of research participants

• Joint research responsibilities

• Shared credit

• Value of mutual skills

Step 3: Research Question

• What are you interested in investigating?

– Mutual Goals

– Narrowing questions

– Hypothesis Generation

– Conceptual Framework

Step 4: Research Design

• Cook Review – Of 20 CBPR projects

• 4 RCTs

• 16 were observational; (cross-section/case-control)

• Methods – Rigor

– Community acceptance and relevance

– Feasibility

– Generalizability versus local impact

Causal Associational

Design: Observational,

Descriptive, Exploratory

Site: Local

Funding: Community

Sample Size: Small

Measurement: Pre-post,

surveys, qualitative (focus

groups/interviews)

Research Rigor and

Cost Increases

Design: Pre/Post Evaluation

possible control group, quasi-

experimental

Site: Local

Funding: Grant

Sample Size: larger

Measurement: Pre-post, Valid

tools

Design: Experimental

(randomization)

Site: Multiple

Funding: Foundation/NIH

Sample Size: Large

Measurement: valid/reliable

measures

Increasing Rigor

Formative

Step 5: Research Conduct

• Roles and responsibilities

• Oversight

• Participatory Methodology

• Flexibility

– Situations change

– Innovation

– Adaptation

Step 6: Analysis/Interpretation/Results

• Input of the community in analysis and interpretation

• Reaching consensus

• Practice and Policy implications

Step 7: Dissemination/Action

• Action

– Policy

– Programs

– Adoption of evidence into practice

• Dissemination

– Who leads what aspects of dissemination?

– More than peer review

Example 1: Youth suicide and overdose

Step 1-Define Your Community

•Somerville, Massachusetts is a city of 77,478, which borders Boston and the cities of Cambridge, Arlington, Medford and Everett (U.S. Census Bureau, 2000).

•Economically and ethnically diverse

•Longstanding substance abuse issues

•Changing property values

•One youth suicide June 2001. Shortly thereafter, two popular students died of Oxycontin overdoses.


Step 2-Engagement

• Series of meetings

– Met with the health department director

– Mayor

– Mayor’s Task Force

– SCAP: a community coalition

Finding Common Ground

• Balancing your priorities and communities priorities • Researcher wants to study adolescent suicide

• Community wants to know how to stop the overdoses and suicides

• Narrowing scope of the question • Skill building for community partners

• Literature review

• Expert consultation


CBPR and Action

Step 3-Research Question

• 1) Was this suicide and overdose activity significantly elevated from baseline?

• 2) Were there common links between victims and was this a contagion/cluster?


Step 4: Design • Design: Intervention Study (pre/post design)

• Intervention: • Community-wide activities to prevent suicide and overdose

• Methods Examine data sources before and after community intervention to

assess impact:

• Record review (i.e., death certificates, 911 call data; hospital discharge data)

• Community mapping/GIS and social networks

• Youth risk behavior survey

• Psychological autopsies


• Primary Null Hypothesis

– Youth suicide and overdoses were isolated events and unrelated to each other in the city of Somerville (there was no evidence of a cluster nor of changes in rates pre and post)

• Secondary Hypotheses

– Community interventions would not impact suicide or overdose before and after 2001


Step 5: Conduct

• Worked with community partners to collect data

– Data monitoring (researchers)

– Social network mapping (community and researchers)

– Interventions (community)

• Education, trauma response network, remembrance, media

• Analysis joint activity


13

12

6

21

20

6

14 14

12

7

14

9

0

5

10

15

20

25

Seriously considered suicide Planned suicide Attempted suicide

MA 2005

Somerville 2002

Somerville 2004

Somerville 2006

Data Source: MassCHIP v3.00r3.13 by January 2007,

Somerville high school 2002 (N=1466), 2004 (N=1382) and 2006

(N=1003) health surveys

%

Step 6-Results


GIS mapping of suicide attempts and suicides 10-24 year olds


Figure 1: Suicides and Lethal Overdoses among 10-24 Year Olds,

Somerville, Massachusetts 1/1994-12/2007

0

0.5

1

1.5

2

2.5

3

3.5

1-3

1994

7-9

1994

1-3

1995

7-9

1995

1-3

1996

7-9

1996

1-3

1997

7-9

1997

1-3

1998

7-9

1998

1-3

1999

7-9

1999

1-3

2000

7-9

2000

1-3

2001

7-9

2001

1-3

2002

7-9

2002

1-3

2003

7-9

2003

1-3

2004

7-9

2004

1-3

2005

7-9

2005

1-3

2006

7-9

2006

1-3

2007

7-9

2007

Suicide

Overdose

Data Source: Death Certificate Data, City

of Somerville 2001-2005


Step 7-Action

• Ongoing monitoring of data

• Community action steps

– Trauma response network continues

– Youth development

– Mental health services

Example 2: Asthma: A community health worker intervention

CBPR and RCT

Community – Detroit East and South side areas (165,000 residents) – 44 elementary schools

• Predominantly minority African American and Latino

• High infant asthma hospitalization rates

• Steering Committee and long standing relationship with

community

• Community: CAAA steering committee (community members and researchers)

• Long-standing relationship with CAAA since 2000


Study Question/Design • Is a health worker household intervention to improve asthma related

health effective

• Design: 1 year randomized controlled clinical trial of a navigation intervention – 9 household visits over 1 year to work with family in making environmental

changes to reduce exposure to asthma triggers

• Sample – 298 inner city children from a school-based asthma program

• Methods Questionnaires mailed to recruit Randomization into intervention or usual care Outcomes: Lung Function; health care utilization


Conduct

• Pre-post measures

– Health outcome measures (PF-FEV1)

– Household dust measures

– Behaviors

Example 2:

Asthma: A community health worker intervention

Results

Parker et al, 2007

CBPR Benefits

Suicide Prevention Study • Access to data • Relevancy • “Helped the community understand the problem” • Knowledge • Capacity building and sustainability for community health

Asthma study • Enhanced retention • Relevant materials • Acceptable intervention • Improved relationships with participants

• Conflict in Partnerships

• Capacity of partners

• Shifting priorities

• Compromises in study design

• Access to and ownership of data

• Dissemination issues

CBPR Challenges

Example 3.

Healthy Public Housing Initiative

CBPR and Study Design

• Community – Boston – Three public housing developments – High risk population

• Community concerns about high

prevalence of asthma in public housing

• CBPR approach in which community members were involved in all aspects of the research

Example 3.



Study Question/Design • Study of the impact of a pest management and environmental

interventions for asthmatic children. • Design: longitudinal single-cohort pre-post study

– Trap placement, intensive cleaning, in-home education around asthma triggers and pest control, replacement of mattresses

• Sample

– 50 children in 41 households

• Methods Questionnaires Outcomes: Self-reported respiratory symptoms and quality of life, allergen

concentrations

Example 3.



• Challenges to design

– Community did not want a control group

– Intervention was bundled

– Focus on the unit in multi-family dwellings made it impossible to mask the intervention

• Unable to establish causality

• Did lead to local policy change

Ethical Issues unique to CBPR

• Insider/Outsider conflicts

• Conflicting time frames

• Risks/consequences to the community

• Assuring equitable participation in all aspects

• Data ownership

• Dissemination

Career Implications

• Time required

• More difficult to publish in timely manner

• Less control over all elements of project

• Making real world impact

• May consider combining with traditional research approaches

Available CBPR Resources

• Catalyst Consultations for CBPR http://catalyst.harvard.edu/services/cbprconsultation.html

• Catalyst educational resources http://catalyst.harvard.edu/services/cbpr.html

• Community Campus Partnerships for Health http://www.ccph.info/

• http://www.cbprcurriculum.info/

http://catalyst.harvard.edu/services/cbpr.html

http://catalyst.harvard.edu/services/cbpr.html

http://www.ccph.info/

http://www.cbprcurriculum.info/

http://www.cbprcurriculum.info/

Institute for Community Health,

Cambridge Health Alliance

• ICH founded in 2000 – Cambridge Health Alliance, CareGroup Healthcare System and

Partners HealthCare

– Funded through community benefit dollars

• Works in partnership with local public health departments and community-based agencies

• Stimulates the creation of innovative programs and health policies through a community based approach that will promote long-term healthy lifestyles

Institute for Community Health

163 Gore Street Cambridge, MA 02141

T: 617.499.6670 F: 617.499.6665

www.icommunityhealth.org

http://catalyst.harvard.edu

Introduction to Community Based Participatory Research

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