1. Issues in Research on Minority Populations Charlotte Brown, Ph.D. Associate Professor of Psychiatry Western Psychiatric Institute and Clinic PMBC Summer Institute, Pittsburgh, PA June, 2007

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