Diversity Issues in Research

1. Diversity Issues in Research Charlotte Brown, Ph.D. Associate Professor of Psychiatry Western Psychiatric Institute and Clinic PMBC Summer Institute, Pittsburgh, PA May 28, 2009

2. The Problem • Racial/ethnic disparities in health status and health care continue • Cannot be accounted for by SES • Our ability to address disparities is limited by low rates of participation of racial/ethnic minorities in health research • Changing demographics of the US • Must be able to serve diverse populations

3. Mental Health Research as an Example • Effective treatments are available for many common psychiatric conditions (e.g., depression, anxiety) • National call for more effectiveness research with emphasis on real-world settings with diverse populations (National Advisory Mental Health Council, 1999) • Recent mandates by National Institutes of Health to increase minority participation in federally funded clinical trials (1994)

4. Need to develop effective models for training researchers to conceptualize, collaborate, and implement research studies in a culturally competence manner • For many areas of health research, this represents a paradigm shift

5. Engaging Diverse Communities in a Process of Scientific Inquiry • More complex than the concept of recruitment • Requires that researchers develop and foster an openness to understanding the values and interests of the groups they want to study • Typical approach is to develop the research study and recruit • Assumption: The research has intrinsic value because it is scientifically sound • Assumption: Research has intrinsic value that everyone should recognize

6. Question • How do I get minorities to understand the value of this work and to participate in my study?

7. Answer • You don’t!

8. Reframe • How can I engage with potential research participants to identify mutual value in the work that I do so that they would be willing to engage in this process of scientific inquiry?

9. We cannot define the value of our work for others • Our work has to have value for research participants • It is our job as researchers to begin the process of finding out what different groups might value in the work that we do • Research participants vary in the reason that they participate in research • What are the benefits of research • Broad or specific • Example: Free treatment for depression

10. Communities/populations will vary in their awareness of the problem • Appropriate strategies to cope with the problem • Formative research strategies may be needed to identify the individual’s understanding of the problem and perceived needs • Example: Depression is often attributed to life stress • Improvement in life circumstances are viewed as appropriate remedy • Effective engagement may require raising awareness first

11. Formative strategies can tell you where to begin in the engagement process • Collaboration is a critical element • Collaboration involves mutuality • Researchers must recognize their own cultural identities • Professional identity, organizational culture • Racial/ethnic identity, social class identity

12. Communities/participant’s may place value on opportunities not directly related to the research • Training for staff • Referrals • Direct source of information about resources available at researcher’s university • Assistance with their own projects

13. Find out about prior research experience • Try to avoid those pitfall’s • Be aware that there may be concerns about you committing the same offenses • Get feedback about current research experience • Incorporate changes as needed into future research implementation projects • Seek consultation • Community experts • Professional experts

14. Commonly Identified Issues • Mistrust • Historical mistreatment • Current negative experiences with the health care system • Benefit to the community as a whole • If the treatment is effective, will it really be made available to the community • Sustainability

15. Commonly Identified Issues • Communication with community about research findings in a responsible way • Comparison Group • Treatment as Usual may be no-treatment for underserved populations • Randomization • Increased education about the research process • Participants rights • Need for a comparison group to determine which treatment is superior

16. Commonly Identified Issues • Study design • Intervention vs. observational • Sampling Approach • Population-based studies vs. community-based recruitment • Type and timing of contacts • Cultural adaptations to study recruitment issues

17. Community Involvement • Many consider this essential • May be challenging for researchers because it often involves moving outside your usual comfort zone • interpersonally • social and cultural values • experiences • authenticity is important • Inclusion of minority investigators-may be a plus, but • Remember that relationships are not transferable • The relationship with the PI is often most important

18. Relationship building is key in working with community agencies and community-based groups • Determine the fit between your goals and theirs • Be clear about the limits of what you can do • Turn mistakes into opportunities for learning and change

19. Models of Community Research Model Access Community Role Outcome

20. Hatch, J. et al., Community Research: Partnership in Black Communities. American Journal of Preventive Medicine, Supplement to V.9 (6) 1993

21. Advice or Consent Givers • Access- • consultant or advisor who works for a human service agency and usually lives outside the community • Community Role • community members have no influence and are unaware of purpose of the research • Outcome • research is community-based but fails to achieve optimal involvement

22. Gate Keepers and Endorsers of the Research • Access • Identify influential people (churches, clubs, fraternal orders, civic associations) • Community Role • Research design is explained to endorsers • Outcome • Research is community-based but the community role is essentially apssive

23. Deliverers of Research • Access • Contact influential community leaders • Community Role • Ask for guidance in hiring community people to work for the research project • Outcome • Research is community based but not community-involved. Members do not have a significant role

24. Active participants in the direction and focus of the research • Access • Community members are collaborators • Community Role • Community members provide input in the direction, design, focus, goals, conduct, analysis and use of the study findings • Outcome • Research is community-based and community-involved as well. The community members are aware and part of the decisions and direction of the research.