Sometimes…. What Seems Unfamiliar and Strange Ends Up Almost Being Business as Usual

1. Sometimes….What Seems Unfamiliar and StrangeEnds Up Almost Being Business as Usual Margaret D. LeCompte, PhD School of Education University of Colorado-Boulder

2. Presented for a SACHRP Panel on Community-Based Participatory Research October 28, 2009 Washington, DC

3. A Definition: • Community-Based Participatory Research (CBPR) is • Research done jointly by a researcher in, and with, a community and the groups that constitute it • On issues of concern to the community members themselves • Resulting in action that leads to resolution of those issues • In ways that benefit the people involved.

4. Key Features of CBPR • It involves building of research partnerships with community organizations and individuals for • Problem identification, planning and implementation of the project, and dissemination of results is done with community collaborators. • Teaching and learning is reciprocal and shared by PI(s) and community participants. • Power is shared by PI and community research partners.

5. Key Features of CBPR • CBPR requires the involvement of a trained researcher/PI/co-PI • Whose job is to take the lead in designing the research end of the study and • In training community research participants to assure their research competence and the adequacy of their knowledge of human research issues.

6. What to study is determined collaboratively. • By members of the community who need a researcher to help them identify and solve problems, or • By community members and researchers working together to identify and solve problems, or • By researchers who have identified a problem in a community and want to implement a problem-solving intervention.

7. All of these options require preliminary fieldwork… Which is NOT part of the actual research project and does NOT usually generate research data-Facts which confuse many IRB panel members

8. Identifying issues requires • The construction of a network of partners who will help with, support, be advocates for, and disseminate results from, the research project as it develops. • Development of a consensus over which issues to tackle • Identification of the kinds of data needed to resolve problems

9. Identifying issues requires • Construction of a plan for collecting the data • Identification of community members who will actually participate in the research process, plus specification of the level at which they can be expected to participate, how much they need to be trained, and how much voice they will be given in the direction of the project and use of its results.

10. These steps are • Familiar to community activists • Crucial in generating background information on the site, problem, populations • Used to identify stakeholders and reliable research partners • VERY unfamiliar to IRBs, BUT… • They do not generate research data. • Do not normally need to be monitored.

11. Nonetheless, • They worry IRB members who do not understand how CBPR is done and • Do not understand research that doesn’t adhere to assumptions underlying non-experimental research, the conditions necessary for doing such research, or the questions asked by social science researchers.

12. Our solution at UC-Boulder? Recruit social scientists to the IRB Develop researcher guidelines for clarifying CBPR and “alternative” research designs to IRBs

13. Problem: • CBPR often seems vague to researchers accustomed to experimental designs and standardized structured surveys

14. Solution: • Educate the IRB members

15. Problem: • Because problem identification often is the focus of the study itself, researchers may have difficulty specifying to IRBs exactly what the research question is. • And the research question may evolve or change as the research unfold.

16. Solution: • Describe the issue under consideration carefully • Describe its observable symptoms or manifestations • Indicate that change requests will be used if needed.

17. Problem: • Because CBPR often is exploratory or descriptive, researchers may not be able to provide the IRB with formalized data collection instruments.

18. Solution: • Solution: Explain research purpose as carefully as possible to the IRB, indicating the origin of the approach or topic and the appropriateness of exploratory research to the project. • Solution: Propose the study as a pilot project, if appropriate. • Solution: Be as specific as possible.

19. Problem: • Because all of the population sectors may not be known, researchers may not be able to specify to the IRB every single population or group to be involved in the study.

20. Solution: • Be as specific as possible. • Indicate that change requests will be used if the original population descriptions and recruitment methods prove inaccurate or inadequate.

21. Problem: • IRB members may not understand how ethnographic or qualitative data collection methods are implemented and how long they take. • Methods initially proposed and approved may have to change in light of unanticipated questions or circumstances.

22. Solution: • Explain methods in detail. • Create a data matrix that displays what is being done to whom, for how long, where, and why • Use change requests to modify, add or delete methods

23. Risks to participants and participant researchers in CBPR • Are more likely to be financial, social, emotional, cultural and political than physical • Are no less serious than physical risks

24. Risks to participants and participant researchers in CBPR • Solution: • Consult with knowledgeable natives about possible risks • Conduct pilot research • Re-consent participants if new risks become known

25. Risks to participants and participant researchers in CBPR • Are more likely to involve violations of participant privacy and disclosure of private identifiable information than in more conventional research

26. Risks to participants and participant researchers in CBPR • Participants may forget they are in a research project, • know which community members are in the research project, • talk to others about information disclosed in group interviews, and • feel coerced to participate if their superiors are conducting the research.

27. Solution: IRBS can ensure that • Participants are reminded often of their status, not just when consented • Researcher/participants are adequately trained • Data elicitation occurs away from community

28. Solution: IRBS can ensure that • Researcher/superiors (e.g., teachers, clinicians) consent participants AFTER data are collected, intervention, treatment or experiment is over, and participant has received services normally available to them, or in the case of students, grades are posted.

29. What can IRBs and Researchers Do? • Recruit members with diverse research approaches, just as they recruit reps for prisoners, the community, schools • Assure that training of community researchers is adequate

30. What can IRBs and Researchers Do? • Determine if PIs plan to include in research reports data about who was contacted for and who was excluded as research partners; why specific people were selected as research partners, and if PIs adequately protected their identity and information about them.

31. What can IRBs and Researchers Do? • IRBS should determine if researchers and their community participants have adequately assessed risks to participants, including participant researchers, informed them of such risks, and if they have made adequate provisions for protecting participant privacy and security of their data.