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Diversity Issues in Research
Charlotte Brown, Ph.D.Associate Professor of PsychiatryWestern Psychiatric Institute and ClinicPMBC Summer Institute, Pittsburgh, PAMay 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 don’t!
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 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
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/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
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
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.
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