HIV Center for Clinical and Behavioral Studies

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Mapping the Ecology of community-researcher
collaborationImplications for HIV prevention
research

• HIV Center for Clinical and Behavioral Studies
• Grand Rounds February 19, 2009

Rogério M. Pinto Assistant ProfessorColumbia
University School of Social Work
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Objectives

• To define community-researcher collaboration
• To examine factors that influence collaboration
• To introduce a framework for collaboration
  Ecological Map of Synergistic Research

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Defining Collaboration

• Community how a group of people identify
  themselves, including, but not limited to,
  gatekeepers, leaders, clergy, law enforcement,
  researchers and service providers.
• Social process in which community collaborators
  and researchers share roles and responsibilities.
• Participation, contribution, involvement,
  membership, and/or partnership between two or
  more actors.
• Domains of community collaboration
• Individuals research participants
• Individuals in Collaborative Boards
• Individuals in Organizations

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Domains of Community Collaboration
Community Board/Coalition Researcher Resident Pra
ctitioner
Institutions Institutional Representative
Subject Study Participant
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Social Professional Processes

• Problem-solving
• Decision-making
• Power-sharing
• Conflict resolution
• Negotiation
• Mediation
• To address mutually-defined health problems

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Why Collaborate?

• Research Challenges
• Much research has neglected the world views and
  cultural needs of populations historically
  excluded (e.g., women, racial and ethnic
  minorities, minority researchers)
• Pathways to culturally incongruous methods and
  interventions
• Unethical research (e.g. Tuskegee)
• Difficult engaging and retaining marginalized
  populations
• Attrition wastes resources, distorts results and
  interpretations
• Bowser Mishra, 2004 Rapkin Trickett, 2005
  Wandersman, 2003
• Escobar-Chavez et al., 2002 NIMH, 1997

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Why Collaborate?

• Solution Collaborative Research
• Integration of lay and scientific knowledge in
  all stages of research
• Lay knowledge reveals world views and subjective
  realities of diverse constituencies
• Collaboration can reduce barriers that discourage
  community participation
• Separately community and researcher CANNOT reap
  the benefits of collaboration
• Ultimate benefit culturally congruous and
  context-relevant science

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Integrating Lay and Scientific Knowledge

• Beyond Advising
• Developing recruitment and program procedures
• Developing interviews and training interviewers
• Developing services for participants that were
  evaluated
• Preparing program manuals, other intervention or
  curriculum materials
• Developing data collection procedures
• Collecting data
• Developing procedures for tracking and retaining
  participants
• Etc..

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Lay Knowledge

• Identify causes of pain and discomfort
• Draw associations between environmental
  conditions and health
• Explain barriers to behavior change
• Improve understanding of associations between the
  etiology of disease and the determinants of
  health
• Functional knowledge
• Confirm, enhance, or contradict research findings
  Improves quality of programs and policies
• Academic and community resources advance
  collective action

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Integrated Framework

• Communities knowledge ? skills ? tasks
• Researchers knowledge knowledge ? skills
  skills ?
• tasks tasks
• Knowledge Knowledge ?complementary, meaningful
  and useful
• Balance and coordination of knowledge, skills and
  tasks
• Collaboration fit between scientific and lay
  knowledge
• Good fit partnership synergy
• Distinguishing element that gives collaborations
  an advantage
• Separately community and researcher CANNOT reap
  all benefits
• Balanced distribution of tasks, responsibilities,
  and resources synergy
• Litwak et al., 1975 and Lasker, Weiss,
  Miller, 2001

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Collaboration

• Meaningful and useful research
• Fosters engagement and attendance in
  interventions
• Enhances relevance of research questions
  results
• Promotes community adoption
• Bridges research and practice
• Gomez Goldstein, 1996 Hardy Phillips,
  1998 Minkler Wallerstein, 2003
• Ochocka et al., 2002 Pinto, McKay Escobar,
  2008

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Research Collaboration

• Most approaches to collaboration have not been
  theoretically or empirically grounded
• Successful collaboration Matter of chance?
  Replicable?
• Theory and empirical data will help replication
• Theory and empirical data will decrease
  inefficient endeavors that may fail to resolve
  the very issues collaboration purports to address
  
• Little systematic research has examined the
  distinguishing factors that make research
  projects genuinely collaborative

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• Research Collaboration
• Collaboration has become widespread
• The scientific community continues to grapple
  with fundamental questions concerning the science
  of collaboration
• What factors facilitate or hamper research that
  integrates diverse knowledge sets?
• Which essential elements are needed to achieve
  optimal inclusion of community in research and
  the integration of lay and scientific knowledge?
• Pinto, R. M. (2008). Community perspectives on
  factors that influence collaboration in public
  health research . Health Education Behavior
• Pinto, R. M. (submitted). Mapping the ecology of
  community-researcher collaboration in public
  health research. Social Science Medicine.

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Background

• Little research has examined, from the
  perspective of CBOs, the factors that make public
  health research genuinely collaborative.
• Community Collaborative Core has created
  opportunities for dialogues
• Working Together Conference to examine
  contemporary issues in HIV research
• CBO representatives identified research
  priorities systematization of facilitators and
  barriers to collaboration
• To identify, from the perspective of CBOs,
  factors that influence collaborative research
  positively, and barriers that may hinder
  collaboration

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Method Recruitment

• The Community Providers Panel (CPP). Four
  providers collaborators interview protocol,
  coding, analysis, and interpretation of data.
• Community-Based Organizations. 10 CBOs funded by
  the (NYCDHMH) 1) at least three instances of
  collaboration 2) availability of the Executive
  Director (ED) and another informant and 3) both
  informants worked on the same projects.
• CBO Informants. ED agreed plus another employee.
  The projects budget allowed for 20 interviews.
  CBOs received 200 as compensation.

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Method Interview Procedures

• Face-to-face semi-structured in-depth interviews
• 45 to 75 minutes
• Audio taped for transcription
• Each ED chose one project they considered most
  collaborative and another they considered least
  collaborative
• Data on both most and least collaborative project
  
• The other informant was asked to focus on same
  projects

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Method Interview Protocol

• To ensure the fidelity of the protocol, an
  independent researcher and one member of the CPP
  reviewed the first two interview tapes plus three
  randomly selected tapes.
• Based on their recommendations, the interviews
  were made shorter, and demographic questions were
  moved to the end of the interview.
• The interviews started with the question, Based
  on the definition of collaboration given to you,
  could you please describe your most/least
  successful collaboration in an HIV prevention
  research project?
• Research collaboration social processes in
  which researchers share roles and
  responsibilities with CBO personnel to accomplish
  tasks such as recruitment, data collection,
  interviews, supervising staff, data analysis,
  writing, and presenting results

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Method Interview Protocol

• To tap different domains of influence, prompts
  focused on
• personal characteristics of ideal researchers and
  of their institutions
• values defining collaborative HIV prevention
  research
• how researchers and community partners build
  relationships
• barriers to collaboration in HIV prevention
  research
• Participants were asked to explore collaboration
  in each phase of research (see figure)
• To specify variables, informants gave examples
  and explained what differentiated low
  collaboration from high collaboration projects

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Method Analytic Strategy

• Data Sampling and Establishing Themes
• One researcher and two CPP members read all
  interviews
• Independently identified basic units of analysis
  grammatical segments and/or chunks of text
• After reading the same pair of transcripts,
  coders held discussions and agreed on the basic
  units of analysis
• Each interview was read line-by-line
• Because open-ended questions prompted all
  informants to describe motivators/facilitators
  and barriers, coders found these variables in all
  transcripts, and they independently identified
  them

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Method Analytic Strategy

• Codebook
• By consensus, coders agreed that main factors
  (motivators and barriers) were identified after
  the first 10 interviews
• The next two transcripts revealed two new codes
  that were collapsed into one. These codes were
  redefined and added to the codebook
• Intercoder reliability was 100
• After completing the codebook, the coders
  reanalyzed all transcripts to adhere to the
  refined codebook
• Codebook summary

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Codebook
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Method Analytic Strategy

• Marking and Selecting Text
• After 16 transcripts saturation occurred (no
  other category or theme)
• Confirmed by fully analyzing all transcripts
• Only text that closely matched the codebook was
  marked
• Upon agreement on passages/text, a grid was
  created
• Only passages chosen by all three coders were
  included
• CPP member independently selected, based on
  clarity of expression and specificity, among the
  passages that best characterized each factor
• These passages (quotes) were then reviewed by
  two coders, and revised for grammatical clarity

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Result Characterizing CBOs

• Ten CBOs
• Five provided medical HIV-related services (HIV
  testing, medical care)
• Five provided social services (counseling, HIV
  prevention workshops)
• Number of staff ranged from 37 to 250 (Mean
  124 SD 74)
• Number of volunteers ranged from 5 to 1200 (Mean
  201 SD 408)
• Seven CBOs involved volunteers in research, six
  involved board members, and nine involved
  consumers
• Number of research projects ranged from 3 to 20
  (Mean 7 SD 2)
• Researchers medical doctors or doctors of
  philosophy mainly in public health, social work,
  and psychology

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Result Characterizing Informants

• Twenty informants 10 EDs and one other
  employee (program directors, associate directors,
  and project coordinators)
• Range of experiences diverse points of view
• Six informants were male and 14 female
• Ages ranged from 26 to 66 (Mean 49 SD 10)
• Eleven White, four Hispanic/Latino, three African
  American, and two Asian/Pacific Islander
• One informant completed high school, four held a
  4-year college degrees, 12 held Masters degrees,
  two degrees in law, and one medical doctor
• Two to 25 years in their positions (Mean 10 SD
  6)

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Influences on CBO Collaboration in HIV Research
(n20)
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High Collaboration Project

• What was successful about that partnership was
  that staff and clients participated actively It
  was important that they had a lot of
  communication, and that everyone was involved in
  all levels. The researcher had knowledge about
  the challenges we faced in the agency Something
  that was very helpful was a prior relationship
  The other thing that I think worked was finding
  together the research topics I think that the
  partnership can be constructed with targeted
  efforts The element of trust was present I
  think that is very important to expose people in
  CBOs to entry-level opportunities with university
  researchers concerned about community-based
  research ... We were informed, and everybody was
  excited, I even have a copy of the published
  results And at the end, there was a general
  presentation for the group ownership!

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Low Collaboration Project

• When we began meeting, we found out that it was
  an extraordinarily burdensome
• demand on us. The researchers wanted us to
  administer a 20-page questionnaire
• We were supposed to ask our participants, "How
  many sexual partners
• have you had in your entire life?" It was
  intrusive, and our staff didn't like it The
  negotiations of the partnership were poignant in
  the imbalance of power It was a torturous
  process that further separated community and
  researcher ... From the
• beginning, I realized that the researcher wanted
  so much control ... We proposed
• everything, and then we had to fight for the
  rights of authorship, rights of capacity,
• the right to a very large amount of data that
  was going to be collected ... The
• researcher was interested in numerical things
  we were more interested in the
• contextual situation We never heard anything
  about the research results ... I
• think it would be very empowering to the
  organization to know the results.

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Factors that Influence Collaboration

• How collaborators experience one anothers
  personalities and manners availability,
  understanding, and trust
• Demographic and cultural characteristics
• Institutional affiliations, location, reputation,
  and resourcefulness
• Prior experience in research
• Shared decision-making
• Having professional aspirations met
• Satisfaction with partners performance
• Adherence to a definition of collaborative
  research

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Synergistic Research

• Draws on partnership synergy and balance and
  coordination of knowledge, skills and tasks
• Equally values lay and scientific knowledge
• Links the values, processes and outcomes of
  collaboration
• Uses complementary knowledge/skills sets to
  distribute tasks, roles and responsibilities at
  each stage of research
• Embodies the values of community-based,
  participatory, action, and empowerment approaches
• Specifies collaboration as the process through
  which diverse knowledge sets can be integrated to
  produce culturally congruous research

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Synergistic Research

• Organized around the requisites of collaboration
  expressed in the community-based, participatory,
  action, and empowerment literatures
• Establishing rapport, priorities and mutual goals
• Integrating lay and scientific knowledge
• Advancing community-sanctioned policies and
  programs

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Synergistic Research

• To realize the requisites of synergistic
  research, a combination of collaborative
  constructs will be necessary.
• At minimum
• Communication
• Cooperation
• Consulting
• Contracting
• Community building
• Claiborne Lawson (2005)

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Collaborative Constructs

• Communication (c1) any and all means used to
  convey thoughts, opinions, attitudes, concerns
  and values -- formal and informal interactions
  -- foundation upon which collaborators implement
  collaboration
• Cooperation (c2) steps (i.e., behaviors) each
  partner takes in order to meet the needs,
  expectations and wishes of other research
  partners
• Consulting (c3) how collaborators contribute
  their unique expertise to the collaboration,
  aiming to integrate lay and scientific knowledge
  sets
• Contracting (c4) formal and informal agreements
  developed for the purpose of specifying how each
  will contribute to the partnership
• Community building (c5) how community
  representatives and researchers interact socially
  and professionally to increase their capacity to
  conduct research and advance public health

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Ecological Map of Synergistic Research
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Conclusions

• Findings and proposed framework can help CBOs
  develop data- and theoretically-driven policies
  to guide their involvement in research
• Researchers may now develop collaborative
  research that fully expresses the perspectives of
  CBOs
• CBO and researcher ought to value equally their
  time, expertise, and priorities to meaningfully
  integrate lay and scientific knowledge
• Synergistic collaboration makes the research more
  useful to CBOs and the clients they serve.
  Therefore, policy makers may prioritize funding
  of research that more closely adheres to what
  CBOs define as collaborative

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Conclusions

• Synergistic research contribution of multiple
  variables that influence the extent to which
  partners can realize requisites
• Establishing Rapport, Priorities and Mutual Goals
• Integrating Lay and Scientific Knowledge
• Advancing Community-Sanctioned Policies and
  Programs
• These can be realized by systematically using
  collaborative constructs communication (c1),
  cooperation (c2), consulting (c3), contracting
  (c4) and community building (c5) and others
• These constructs will repeat themselves over time
  until A, B and C are all realized synergistic
  collaboration

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Directions in Research on Collaboration

• K01 multiple collaborations
• Community Collaborative Research Board
• Community Health Workers Project (Brazil)
• CTN provider data
• Developing context-specific collaboration models
• Comparative models for myriad diseases and
  medical conditions
• Different environmental contexts (domestic
  international)
• Evaluation tools (process and outcome)
  Empowerment
• Participatory methodologies to study
  collaboration itself

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Acknowledgement

• Funders
• NIMH 5K01MH081787-02
• Columbia University Diversity Program
• HIV Center for Clinical and Behavioral Studies