HIV Center for Clinical and Behavioral Studies Grand Rounds – February 19, 2009 Mapping the Ecology of community-researcher collaboration: Implications.

HIV Center for Clinical and Behavioral StudiesHIV Center for Clinical and Behavioral StudiesGrand Rounds – February 19, 2009Grand Rounds – February 19, 2009

Mapping the Ecology of community-researcher collaboration:

Implications for HIV prevention research

Rogério M. PintoRogério M. PintoAssistant ProfessorAssistant Professor

Columbia University School of Social WorkColumbia University School of Social Work

ObjectivesObjectives

To define community-researcher collaboration

To examine factors that influence collaboration

To introduce a framework for collaboration – Ecological Map of Synergistic Research

Defining CollaborationDefining 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:1. Individuals – research participants2. Individuals in Collaborative Boards 3. Individuals in Organizations

Domains of Community CollaborationDomains of Community Collaboration

CommunityBoard/

Coalition

ResearcherResident

Practitioner

Institutions

Institutional Representativ

e

“Subject”

StudyParticipant

Social & Professional ProcessesSocial & Professional Processes

Problem-solvingDecision-making Power-sharingConflict resolutionNegotiationMediation To address mutually-defined health

problems

Why Collaborate?Why Collaborate?

Research ChallengesResearch 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 populationsAttrition wastes resources, distorts results and

interpretations

Bowser & Mishra, 2004; Rapkin & Trickett, 2005; Wandersman, 2003 Escobar-Chavez et al., 2002; NIMH, 1997

Why Collaborate?Why Collaborate?

Solution: Collaborative ResearchSolution: 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

Integrating Integrating LayLay and and ScientificScientific Knowledge 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..

Lay KnowledgeLay 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 resourcesresources advance collective action

Integrated FrameworkIntegrated Framework Communities = knowledge skills tasksResearchers = 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

Collaboration 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

Research Research CollaborationCollaboration

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

Research CollaborationResearch Collaboration

Collaboration has become widespreadThe scientific community continues to grapple with

fundamental questions concerning the science of collaboration:

1.What factors facilitate or hamper research that integrates diverse knowledge sets?

2.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.

Background 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

Method: RecruitmentMethod: RecruitmentThe 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 project’s budget allowed for 20 interviews. CBOs received $200 as compensation.

Method: Method: Interview ProceduresInterview ProceduresFace-to-face semi-structured in-depth interviews45 to 75 minutesAudio 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

Method: Method: Interview ProtocolInterview ProtocolTo 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

Method: Method: Interview ProtocolInterview ProtocolTo tap different domains of influence, prompts focused on:

1)personal characteristics of ideal researchers and of their institutions

2)values defining collaborative HIV prevention research3)how researchers and community partners build relationships4)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

Method: Method: Analytic StrategyAnalytic Strategy

Data Sampling and Establishing ThemesOne researcher and two CPP members read all

interviews Independently identified basic units of analysis –

grammatical segments and/or chunks of textAfter reading the same pair of transcripts, coders held

discussions and agreed on the basic units of analysisEach interview was read line-by-lineBecause open-ended questions prompted all

informants to describe motivators/facilitators and barriers, coders found these variables in all transcripts, and they independently identified them

Method: Method: Analytic StrategyAnalytic Strategy

CodebookBy 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

Domains Definitions of Factors

Researcher’s Characteristics

▪ Researcher’s expertise, availability and social skills▪ Researcher’s institutions in terms of their financial and intellectual resources and reputation

Collaborative Research Characteristics

▪ Purpose of the research, ability of the research to enhance participant’s lives, improve HIV services and CBO infrastructure, CBO staff skills and knowledge base

Community- Researcher Relationship

▪ Relationship building and processes on resolving social and professional tensions

Barriers to Collaboration

▪ Differences between CBO and academia in terms of priorities and values, CBO’s lack of funding and experience, and lack of information sharing

CodebookCodebook

Method: Method: Analytic StrategyAnalytic 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

Result: Result: Characterizing CBOsCharacterizing 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

Result: Result: Characterizing InformantsCharacterizing 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 Master’s degrees, two degrees in law, and one medical doctor

Two to 25 years in their positions (Mean = 10; SD = 6)

Domains and Factors n1 n2

Researcher’s  Characteristics 17 Personal   Expertise 14 (82%)   Availability 11 (65%)   Social skills 7 (42%) Institutional 8   Financially and intellectually resourceful 8 (100%)   Reputable    8 (100%)

Collaborative Research Characteristics 15    Ought to improve services and CBO infrastructure 15 (100%)    Ought to have a purpose defined by all partners 13 (87%)    Ought to involve participants and enhance their lives 13 (87%)    Ought to involve CBO staff 12 (80%)    Ought to improve knowledge base of CBO  staff 12 (80%)

Community Partner-Researcher Relationship 13 Getting to know each other  Resolving social and professional issues 

Barriers to HIV Prevention Research Collaboration 12   Lack of CBO experience in research 12 (100%)   Cultural and social disconnect between CBO and academia 11 (92%)   Lack of CBO time and human resources 10 (83%)   Lack of information sharing between partners 6 (50%)

Influences on CBO Collaboration in HIV Research Influences on CBO Collaboration in HIV Research (n=20)(n=20)

High Collaboration ProjectHigh 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!”

Low Collaboration ProjectLow 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.”

Factors that Influence CollaborationFactors that Influence Collaboration

How collaborators experience one another’s personalities and manners – availability, understanding, and trust

Demographic and cultural characteristics Institutional affiliations, location, reputation,

and resourcefulnessPrior experience in research Shared decision-making Having professional aspirations metSatisfaction with partners’ performanceAdherence to a definition of collaborative

research

Synergistic ResearchSynergistic Research

Draws on “partnership synergy” and “balance and coordination” of knowledge, skills and tasks

Equally values lay and scientific knowledgeLinks 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

Synergistic ResearchSynergistic Research

Organized around the requisites of collaboration expressed in the community-based, participatory, action, and empowerment literatures:

1. Establishing rapport, priorities and mutual goals2. Integrating lay and scientific knowledge3. Advancing community-sanctioned policies and

programs

Synergistic ResearchSynergistic Research

To realize the requisites of synergistic research, a combination of collaborative constructs* will be necessary.

At minimum:1.Communication2.Cooperation3.Consulting4.Contracting5.Community building

Claiborne & Lawson (2005)*

Collaborative ConstructsCollaborative 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

Ecological Map of Synergistic ResearchEcological Map of Synergistic Research

ConclusionsConclusionsFindings 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

ConclusionsConclusions

Synergistic research = contribution of multiple variables that influence the extent to which partners can realize requisites:

A. Establishing Rapport, Priorities and Mutual GoalsB. Integrating Lay and Scientific Knowledge C.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

Directions in Research on Collaboration Directions in Research on Collaboration

K01 = multiple collaborationsCommunity Collaborative Research BoardCommunity Health Workers Project (Brazil)CTN provider dataDeveloping context-specific collaboration modelsComparative models for myriad diseases and medical

conditionsDifferent environmental contexts (domestic &

international) Evaluation tools (process and outcome) –

EmpowermentParticipatory methodologies to study collaboration

itself

AcknowledgementAcknowledgement

FundersFunders

NIMH – 5K01MH081787-02 Columbia University Diversity Program HIV Center for Clinical and Behavioral

Studies