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

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

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)

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

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

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

Answer You dont!

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?

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

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 individuals 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

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

Communities/participants may place value on opportunities not directly related to the research Training for staff Referrals Direct source of information about resources available at researchers university Assistance with their own projects

Find out about prior research experience Try to avoid those pitfalls 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

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

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

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

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

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

Models of Community Research 1. Advice or Consent Givers Often consultant or advisor work for human service org. and usually live outside the community The community members have no influence and are unaware of the purpose of the research Research is community based but fails to achieve optimal involvement 2. Gate Keepers and Endorsers of the Research Identify influential people (e.g., churches, clubs, fraternal orders, and civic associations) The research design is explained to endorser. Researcher retains total control of research project Research is community based but the community role is essentially passive 3. Deliverers of Research or Programs (e.g., front-line staff) Contact influential community leaders Ask for guidance in hiring community people to work for the research project Research is community based but not community involved. Members do not have a significant role 4. Active Participants in the direction and focus of the research Community members are collaborators Community members provide input and negotiates in direction, design, focus, goals, conduct, analysis, and use of the study findings Research is community based and community involved as well. The community members are aware and part of the decisions and direction. Model Access Community Role Outcome

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

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

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

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

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.