HIV Center for Clinical and Behavioral Studies Grand Rounds – February 19, 2009 Mapping the Ecology of community-researcher collaboration: Implications for HIV prevention research Rogério M. Pinto Assistant Professor Columbia University School of Social Work

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

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: 1. Individuals – research participants 2. Individuals in Collaborative Boards 3. Individuals in Organizations

Domains of Community Collaboration Community Board/Coalition Researcher Resident Practitioner Institutions Institutional Representative “Subject” Study Participant

Social & Professional Processes  Problem-solving  Decision-making  Power-sharing  Conflict resolution  Negotiation  Mediation  To address mutually-defined health problems

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

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

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..

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 resources  Academic and community resources advance collective action

Integrated Framework 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

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 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

Research Collaboration  Collaboration has become widespread  The 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  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: Recruitment 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 project’s budget allowed for 20 interviews. CBOs received $200 as compensation.

Method: Interview Procedures 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

Method: Interview Protocol 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

Method: Interview Protocol  To tap different domains of influence, prompts focused on: 1) personal characteristics of ideal researchers and of their institutions 2) values defining collaborative HIV prevention research 3) how researchers and community partners build relationships 4) 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: 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

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

DomainsDefinitions 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 Codebook

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

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

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 Master’s degrees, two degrees in law, and one medical doctor  Two to 25 years in their positions (Mean = 10; SD = 6)

Domains and Factorsn1n1 n2n2 Researcher’s Characteristics17 Personal Expertise14 (82%) Availability11 (65%) Social skills 7 (42%) Institutional8 Financially and intellectually resourceful 8 (100%) Reputable 8 (100%) Collaborative Research Characteristics15 Ought to improve services and CBO infrastructure15 (100%) Ought to have a purpose defined by all partners13 (87%) Ought to involve participants and enhance their lives13 (87%) Ought to involve CBO staff12 (80%) Ought to improve knowledge base of CBO staff12 (80%) Community Partner-Researcher Relationship13 Getting to know each other Resolving social and professional issues Barriers to HIV Prevention Research Collaboration12 Lack of CBO experience in research12 (100%) Cultural and social disconnect between CBO and academia11 (92%) Lack of CBO time and human resources10 (83%) Lack of information sharing between partners 6 (50%) Influences on CBO Collaboration in HIV Research (n=20)

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!”

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.”

Factors 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 resourcefulness  Prior experience in research  Shared decision-making  Having professional aspirations met  Satisfaction with partners’ performance  Adherence to a definition of collaborative research

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

Synergistic Research  Organized around the requisites of collaboration expressed in the community-based, participatory, action, and empowerment literatures: 1. Establishing rapport, priorities and mutual goals 2. Integrating lay and scientific knowledge 3. Advancing community-sanctioned policies and programs

Synergistic Research  To realize the requisites of synergistic research, a combination of collaborative constructs* will be necessary.  At minimum: 1. Communication 2. Cooperation 3. Consulting 4. Contracting 5. Community building Claiborne & Lawson (2005)*

Collaborative Constructs  Communication (c 1 )= any and all means used to convey thoughts, opinions, attitudes, concerns and values -- formal and informal interactions -- foundation upon which collaborators implement collaboration  Cooperation (c 2 )= steps (i.e., behaviors) each partner takes in order to meet the needs, expectations and wishes of other research partners  Consulting (c 3 ) = how collaborators contribute their unique expertise to the collaboration, aiming to integrate lay and scientific knowledge sets  Contracting (c 4 )= formal and informal agreements developed for the purpose of specifying how each will contribute to the partnership  Community building (c 5 )= how community representatives and researchers interact socially and professionally to increase their capacity to conduct research and advance public health

Ecological Map of Synergistic Research

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

Conclusions  Synergistic research = contribution of multiple variables that influence the extent to which partners can realize requisites: A. Establishing Rapport, Priorities and Mutual Goals B. Integrating Lay and Scientific Knowledge C. Advancing Community-Sanctioned Policies and Programs  These can be realized by systematically using collaborative constructs – communication (c 1 ), cooperation (c 2 ), consulting (c 3 ), contracting (c 4 ) and community building (c 5 ) and others  These constructs will repeat themselves over time until A, B and C are all realized = synergistic collaboration

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

AcknowledgementFunders  NIMH – 5K01MH  Columbia University Diversity Program  HIV Center for Clinical and Behavioral Studies