Community-based Participatory Research in International Settings Kathie Culhane-Pera, MD MA Associate Medical Director West Side Community Health Services AAFP Global Health Conference October 12, 2013

Activity Disclaimer ACTIVITY DISCLAIMER It is the policy of the AAFP that all individuals in a position to control content disclose any relationships with commercial interests upon nomination/invitation of participation. Disclosure documents are reviewed for potential conflicts of interest (COI), and if identified, conflicts are resolved prior to confirmation of participation. Only those participants who had no conflict of interest or who agreed to an identified resolution process prior to their participation were involved in this CME activity. I, Kathie Culhane-Pera, affirm that I have no relevant financial relationships to disclose.

Lecture Objectives By the end of the presentation, the learner will be able to: Describe benefits and challenges of CBPAR Compare/ contrast qualitative and quantitative research Describe strengths of mixed methods List essential elements in international research

Presentation Overview Community-based Participatory Action Research What? Why? How? Mixed Methods Qualitative Quantitative Essential Elements in International Research Language/s Background social/cultural knowledge Collaborators Ethics/ Consent

Introductions: International Research Experiences and Interests Presenter Participants International research experiences? Community members involved? Quantitative methods? Qualitative methods? Successful? Frustrations? Logistical challenges? Ethical challenges? Choose a topic of interest to reflect upon during today’s session.

CBPAR - Definitions Community-based Participatory Action Research Other acronyms: CBR, CBPR, PAR, CPR Collaboration is a research partnership among equals with complementary knowledge/expertise. Partnership is the process of establishing and sustaining a mutually respectful relationship based on the sharing of responsibilities, costs and benefits, with outcomes that are satisfactory to all partners.

Barbara Israel - Definition “CBPR is a partnership approach to research that equitably involves all participants in all aspects of the research process where each person shares his/her expertise in order to enhance knowledge and to develop interventions that will benefit the whole community.”

Barbara Israel- Key Principles Recognizes community as a unit of identity Begins with/ builds on strengths & resources in the community Facilitates collaborative, equitable partnership in all phases of the research - an empowering and power-sharing process Promotes co-learning and capacity building Integrates and creates a balance between knowledge generation and action for mutual benefit of all partners Emphasizes local relevance of public health problems… that attend to multiple determinants of health and disease. Involves systems development through cyclical/ iterative process Disseminates findings to all partners and involves all partners in the dissemination process as co-authors and presenters Involves long-term process and commitment on the part of all partners.

Randy Stoecker - Definition CBPAR is NOT a research project. “It is a social change project of which the research is one piece. As such, it has three goals: Learn relevant knowledge/ skills, Develop relationships of solidarity, Engage in action that wins victories and builds self-sufficiency. Doing research is not, in itself, a goal. Research is only a method to achieve these broader goals.”

Budd Hall - Seven Characteristics The "problem" originates within the community or workplace The research goal is to fundamentally improve the lives of those involved, through structural transformation. The people in the community or workplace are involved in controlling the entire research process. The focus of PAR is on oppressed groups whose issues include inaccessibility, colonization, marginalization, exploitation, racism, sexism, cultural disaffection, etc. Participatory research plays a role in enabling by strengthening people’s awareness of their own capabilities. The people themselves are researchers, as are those involved who have specialized research training. The researchers with specialized training may be outsiders to the community, but are committed learners in a process that leads to militancy (fighting for change) rather than detachment.

The Spectrum of Research Researcher Driven Participatory Communities & researchers decide about topics, questions, & methods Power and decision making are shared equally Communities/ researchers are experts and co-learners Primary goals are improved health, empowerment & capacity building Researchers select research topics, questions, & methods Power and decision making are in researchers’ hands Researchers are the experts Primary goal is knowledge production for its own sake

Degrees of Community Engagement in Research No community engagement Community placed research Collaboration with community, but researcher driven CBPR or CBPAR Secondary data analysis, or basic science Recruitment from community organization Community sponsor on researcher defined project Community involved in all aspects of research

Application to your topic of interest Consider how CBPAR could assist in addressing your topic of interest. How can community be involved as an equal partner in this project? Who are relevant partners? What are appropriate questions? What types of data are needed? What dissemination and application could benefit community?

Mixed Methods Quantitative Qualitative “Statistics are people without the tears.” “Not everything that can be counted counts, and not everything that counts can be counted.” “The methods should emanate from the goals and the questions asked.” The methods should follow the goals

Quantitative Design Define the Formulate Make Design research hypothesis operational research question definitions instruments Gather Analyze Draw data data conclusions Publish Generate more questions

Quantitative Methods/ Analyses METHODS: 1. Measurements: biological, physical, psychological 2. Standardized instruments 3. Questionnaires/ surveys 4. Observation with standardized tool ANALYSES: Statistical analyses, inferential statistics

Qualitative Research Cycle Explore area of concern Collect Data Identify area of concern Analyze Data Reformulate Refine Verify Triangulate Write conclusions

1. Participant Observation Qualitative Methods 1. Participant Observation 2. Long in-depth interviews 3. Key informant interviews 4. Focus Groups 5. Case studies: 1 or series 6. Surveys with open-ended questions

Analysis Styles Template style: Read text, use a predetermined codebook template to code data, and identify themes. Editing style: Read text, identify codes, group into categories, create coding tree, and identify themes. Immersion/ crystallization: Through intensive reading/ familiarity, become aware of themes. Quasi-statistical: Use code book to create categories, and then use statistics to identify connections between categories. Crabtree B & Miller W, Doing Qualitative Research, 2nd ed, 1999.

Comparing Quantitative and Qualitative Paradigms Quantitative Qualitative Objective Subjective One reality Multiple realities Impersonal Personal Testing Discovery Generalizable Situation specific Global Local

Research Intent QUANTITATIVE QUALITATIVE Overall Goal Discovery “We found the earth” Interpretation “This is what the earth means to us” Describe Explain Predict Describe Explain Discover universal truths Generalizations Discover local truths Theory testing Theory generating Theory testing Test causal hypotheses Discover experiences Discover meaning Evaluate interventions

Research Questions QUANTITATIVE QUALITATIVE Identification Description What is this? Who is that? Description How many? How much? How often? What size? What is the nature of the phenomena? What variations exist? What does this mean? Explanations Associations Does X relate to Y, Z? Why did it happen? What is happening? What patterns exist? How similar/ different? How did it happen? Explanations Predictions Does X cause Y? Evaluation What difference did program make?

Comparing Qualitative & Quantitative Research    QUANTITATIVE  QUALITATIVE Dominant Disciplines Epidemiology Basic Science Anthropology Theory Positivistic Relativistic Model of Reasoning Linear Reductionistic Deductive Iterative (recursive) Holistic Inductive Unit of Study Measurable phenomena Experienced reality Language Mathematical NUMBERS Naturalistic WORDS/ STORIES

Comparing Qualitative & Quantitative Research    QUANTITATIVE  QUALITATIVE Types of Data Collection Measurements Questionnaires Participant Observation Long Interviews Focus Groups Sample Size Generally Large Generally Small Sampling Strategy Based on statistical power analyses & randomization Search for information rich cases & continue until “saturation” Purposeful Snowballing Data Analysis Statistical Interpretive (to quasi-statistical) Generalizability High Often low

Comparing Qualitative & Quantitative Research Validity (goodness) Non-contextually based Contextually based on completeness, plausibility, illustrativeness Multiple methods/ triangulation of data Reliability (trustworthiness) Statistically determined Researcher dependent Role of Researcher Objective bystander – outside of the process Research instrument – part of the process Reflexivity Non-existent Instrumental/ essential Strengths Easier to analyze and generalize to larger number of persons In-depth understandings, unexpected insights

Why Mix Methods? Added value and understanding from different “ways of knowing” Iterative approach where results from each method support use of the next method Examples: Explore then count Count then explain Explore, then count, then explain Production of multiple “truths” or “realities” Triangulation of methods for comparison of results Involvement and buy-in from community

Application to your topic of interest Consider how mixed methods could assist in addressing this issue. How could you conduct qualitative methods initially? How could you build upon qualitative results to design and conduct quantitative methods?

Essential Elements of International Research Background community knowledge: Language Social structures Cultural beliefs, values and practices Political systems Economic conditions Background research knowledge: International literature search Partnerships with community members, researcher institutions, and local organizations Research team Local researchers Bilingual-bicultural community workers

Essential Elements continued: Ethics/ Consent Permission: country, institution, IRBs Websites for further information: NIH-Fogarty Center WHO: COIMS: International Ethical Guidelines for Biomedical Research Involving Human Subjects WHO: Ethical Issues in Patient Safety - 2013 DHHS Cross-cultural ethics in research NAPCRG Policy: Community Participatory Research Green et al: Guidelines for Participatory Research in Health Promotion

Application to your topic of interest What background information/ knowledge/ understanding do you need before doing research? Who are your partners? What government regulations do you need to follow? What IRB regulations do you need to follow?

Recommendations Create partnerships with community members Choose social projects that will improve health of the community Conduct research to serve the community’s needs, not just the researchers’ needs Carefully chose appropriate quantitative and qualitative methods that fit the research questions Combine quantitative and qualitative methods to strengthen results Obtain permission consistent with country’s laws

References- CBPAR Hall BL. Participatory research, popular knowledge, and power: A personal reflection. Convergence. 14(3): 6-19. Israel BA, Eng E, Schulz A, and Parker E, ed. Methods in Community-Based Participatory Research for Health. First ed. San Francisco, CA: John Wiley & Sons; 2005:52-72. Minkler M and Wallerstein N, eds. 2nd ed. Community-Based Participatory Research for Health: From Process to Outcomes. San Francisco: Jossey-Bass, 2008:47-66. Macaulay AC, Commanda LE, Freeman WL, et al. Participatory research maximizes community and lay involvement. North American Primary Care Research Group. BMJ. 1999;319:774-778. Macaulay AC CL, Freeman WL, Gibson N, McCabe ML, Robbins CM, Twohig PL,. Responsible Research with Communities: Participatory Research in Primary Care. http://www.napcrg.org/responsibleresearch.pdf Stoecker R. Research Methods for Community Change: A project-based approach. Thousand Oaks, CA: Sage. 2005. Wallerstein N, Duran B. Community-based participatory research contributions to intervention research: the intersection of science and practice to improve health equity. Am J Publ Health. 2010;100 Supplement 1:S40-46.

References Qualitative research: Crabtree B & Miller W, eds. Doing Qualitative Research. 2nd ed. Thousand Oaks CA: Sage Publications; 1999. Mack N, Woodsong C, MacQueen KM, et al. Qualitative Research Methods: Data Collectors Field Guide. Family Health International, 2005. WHO Standards for Ethics Review -2011: http://whqlibdoc.who.int/publications/2011/9789241502948_eng.pdf WHO Patient Safety in Research -2013: http://apps.who.int/iris/bitstream/10665/85371/1/9789241505475_eng.pdf Justice: Pratt B and Loff B. A Framework to Link International Clinical Research to the Promotion of Justice in Global Health. Bioethics. 2012. doi: 10.1111/bioe.12009