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.