introduction to community based participatory research
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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.
Example 1: Youth suicide and overdose
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
Example 1: Youth suicide and overdose
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?
Example 1: Youth suicide and overdose
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
Example 1: Youth suicide and overdose
• 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
Example 1: Youth suicide and overdose
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
Example 1: Youth suicide and overdose
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
Example 1: Youth suicide and overdose
GIS mapping of suicide attempts and suicides 10-24 year olds
Example 1: Youth suicide and overdose
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
Example 1: Youth suicide and overdose
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
Example 2: Asthma: A community health worker intervention
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
Example 2: Asthma: A community health worker intervention
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.
Healthy Public Housing Initiative
CBPR and Study Design
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.
Healthy Public Housing Initiative
CBPR and Study Design
• 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/
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
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