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THE CRAB:. HELPING INVESTIGATORS THINK ‘OUTSIDE THE BOX’ Angela F. Ford, MSW, Phd (cand.) Associate Director Center for Minority Health Graduate School of Public Health University of Pittsburgh American Public Health Association Annual Meeting Washington DC November 9, 2004.

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The crab

THE CRAB:

HELPING INVESTIGATORS THINK ‘OUTSIDE THE BOX’

Angela F. Ford, MSW, Phd (cand.)

Associate Director

Center for Minority Health

Graduate School of Public Health

University of Pittsburgh

American Public Health Association Annual Meeting

Washington DC

November 9, 2004

Center for Minority Health,Graduate School of Public Health, University of Pittsburgh


Contributing faculty staff

Angela F. Ford, MSW

Associate Director

Center for Minority Health

Graduate School of Public Health

University of Pittsburgh

Valire Carr Copeland, PhD

Associate Professor

School of Social Work

University of Pittsburgh

Stephen B. Thomas, PhD

Director, Center for Minority Health

Philip Hallen Professor of Community Health & Social Justice

Graduate School of Public Health

University of Pittsburgh

Jeannette South-Paul, MD

Chair, Department of Family Medicine

University of Pittsburgh

Medical Director, University of Pittsburgh Medical Center

Division of Community

Health Services

Contributing Faculty & Staff

Center for Minority Health,Graduate School of Public Health, University of Pittsburgh


Center for minority health stephen b thomas phd director

Center for Minority HealthStephen B. Thomas, PhD., Director

  • Established in 1994

  • Committed to translating evidence-based research into community-based interventions and innovative outreach practices

  • Provides the infrastructure, among the Schools of Health Sciences, for addressing health issues among ethnic and racial minority and other vulnerable and underserved populations.

  • Activities are closely tied to the National Initiative to Eliminate Racial and Ethnic Disparities in Health and the Nation’s health promotion and disease prevention agenda established in Healthy People 2010, whose goals are:

  • To increase the quality and years of healthy life

  • To eliminate health disparities

Center for Minority Health,Graduate School of Public Health, University of Pittsburgh


Health disparity priority areas

Health Disparity Priority Areas

Cancer Screening and Management

Cardiovascular Disease

Diabetes

HIV Infection/AIDS

Immunizations (adult and child)

Infant Mortality

Mental Health

Center for Minority Health,Graduate School of Public Health, University of Pittsburgh


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CENTER FOR MINORITY HEALTH

Graduate School of Public HealthUniversity of Pittsburgh

Funded by the National Institutes of Health

National Center for Minority Health and Health Disparities

Center for Minority Health,Graduate School of Public Health, University of Pittsburgh


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EXPORT (Excellence in Partnerships for Community Outreach, Research on Health Disparities and Training) HEALTH

Center for Minority Health,Graduate School of Public Health, University of Pittsburgh


Export health community outreach and information dissemination core

EXPORT HEALTH Community Outreach and Information Dissemination Core

  • builds upon the existing infrastructure within the Center for Minority Health

  • integrates the EXPORT Center into existing CMH community based health promotion activities

  • serves as the conduit for increasing our capacity to do community-based participatory research

Angela Ford, MSWCo-Director

Dr. Valire Carr-Copeland

Co-Director

Center for Minority Health,Graduate School of Public Health, University of Pittsburgh


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Facilitates Communication

Between Investigator

and Community

Opportunity for

Researchers

to Learn

about Community

and Cultural Norms

Provides Forum for

Dissemination of

Research Findings

CRAB

Opportunity to Learn

about Research Process

Opportunity to

Improve

Process of

Informed Consent

Increases Likelihood

That Study Will Be

Culturally Competent

Provides feedback

and recommendations

Fosters Partnership

Facilitates liaison

and partnership

Center for Minority Health,Graduate School of Public Health, University of Pittsburgh


African american stakeholders and opinion leaders

African American Stakeholders and Opinion Leaders

Consumers

Survivors

Community activists

Clergy

Police officer

Paramedic

Accountant

Family Practitioners

Retired public health nurse

Vietnam veteran

Health educators

University Faculty & Research Investigators

Center for Minority Health,Graduate School of Public Health, University of Pittsburgh


Member affiliations

YWCA of Greater Pittsburgh

Kingsley Association, Inc.

Magee-Womens Hospital

Centers for Healthy Hearts and Souls, Inc.

Hosanna House, Inc.

Mental Health Association

Lemington Eldercare Services

University Book Center

Primary Health Care Services, Inc.

Allegheny County Bureau of Drug/Alcohol Services

Theological Seminary

Minority Purchasing Council

Hispanic Chamber of Commerce

Sickle Cell Society, Inc.

Macedonia FACE, Inc.

Giant Eagle Groceries

Greater Allen Baptist Church

Rodman Street Baptist Church

Theological Seminary – Metro Urban Institute

Program for Women in Early Recovery (POWER)

Member Affiliations

Center for Minority Health,Graduate School of Public Health, University of Pittsburgh


Faculty representation

Graduate School of Public Health

School of Social Work

Center for Health Care Diversity (Duquesne Univ)

School of Medicine

Mercy Hospital

Allegheny General Hospital

Children’s Hospital

School of Nursing

Faculty Representation

Center for Minority Health,Graduate School of Public Health, University of Pittsburgh


Year 1 2001 2002

Year 1: 2001 - 2002

  • Met quarterly

  • Focused on:

    • Established trust and credibility

    • Developed operating principles & investigator guidelines

    • Increased members’ awareness related to:

      • Public Health

      • CMH

      • Racial & Ethnic Disparities in Health & Health care

      • Research (research ethics, informed consent, IRB)

      • Health literacy

      • Cultural competency

      • Clinical trials

Center for Minority Health,Graduate School of Public Health, University of Pittsburgh


Year 2 2002 2003

Year 2: 2002 - 2003

  • Met every other month & reviewed one presentation/month

  • Focused on:

    • Promoting the CRAB

    • Investigator presentations to the CRAB

    • Implementing and refining the process

    • Continued education and awareness

    • Provided feedback from CRAB members to PIs

    • CRAB members began receiving stipends

Center for Minority Health,Graduate School of Public Health, University of Pittsburgh


Year 3 2003 2004

Year 3: 2003 - 2004

  • Met monthly

    • Monthly presentations – added meetings due to demand

    • Continued to refine the process

    • Continued education

    • Revised guidelines

    • Agreed on Core group of members to stay on indefinitely to ensure continuity of process

Center for Minority Health,Graduate School of Public Health, University of Pittsburgh


The challenge plan for year 4

The Challenge & Plan for Year 4

  • While the CRAB is not a requirement or an IRB, it should be seen as credible and having some impact on the institution and the manner in which it conducts research. Therefore, we want to:

  • Continue to position the CRAB as an effective University entity, without making it a regulatory board.

  • Ensure that we are not being used as a vehicle to legitimize what investigators are already doing wrong.

  • Encourage investigators to come to the CRAB earlier in their grant application process.

  • Evaluate the experience of CRAB members and Investigators.

  • Create our own database of research being conducted in the African American community.

  • Community-level meetings on the Community Based Participatory Research Model have been planned for the summer.

Center for Minority Health,Graduate School of Public Health, University of Pittsburgh


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OPERATING PRINCIPLES

  • Providing feedback, based on diverse perspectives

  • Increasing their awareness

  • Sharing knowledge and transferring information

  • Building both the academic and community capacity to conduct research

Center for Minority Health,Graduate School of Public Health, University of Pittsburgh


Operating principles

Applying the Ten Commandments of Community-based Research

Creating opportunities for further collaboration and partnership

Maintaining an active membership of 30 individuals at all times

Committing to serve for two years.

Rotating inactive members off in June of each year -- new members added

OPERATING PRINCIPLES

Center for Minority Health,Graduate School of Public Health, University of Pittsburgh


Ten commandments of community based research

Consult the community

Value process as you value outcome

Hold community objections to be the higher good

Do not covet the community data

Do not commit analysis of community data without community input

Do not bear false witness towards community members

Do not release findings before the community is consulted

Train and hire community people

Do not violate confidentiality

Freely confess thyself to be biased

Ten Commandments of Community Based Research

Center for Minority Health,Graduate School of Public Health, University of Pittsburgh


Compensation to members

Compensation to Members

  • CRAB members attending at least 33% of the meetings during a given academic year will be paid $50 for each meeting attended.

  • Stipends will be paid in June of each year.

  • Individuals employed by the University (staff) will receive compensation if approved by their academic departments.

  • University faculty contribute their time and do not receive stipends.

Center for Minority Health,Graduate School of Public Health, University of Pittsburgh


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Community consultation provides an opportunity for researchers to honestly explain their research and raise considerations of community benefits that the community must examine.

They believe that honest disclosure by researchers will enhance community willingness to engage as participants in research that ultimately will be beneficial to the community.

(Melton et al. 1988)

Center for Minority Health,Graduate School of Public Health, University of Pittsburgh


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The community advisors may also guide researchers by anticipating issues that prospective participants may raise.

Community representatives are more likely to question researchers with less intimidation and trepidation than are potential research study participants.

This may serve as a model of conduct to reassure potential research study participants that it is reasonable and appropriate to question the motives and methods of researchers.

(Melton et al. 1988)

Center for Minority Health,Graduate School of Public Health, University of Pittsburgh


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Community consultation has numerous benefits for the researcher, the community, and the potential participant (Levine, 1986)

Center for Minority Health,Graduate School of Public Health, University of Pittsburgh


Investigator guidelines

Investigator Guidelines

  • 15 minute presentation

  • Informal – no PowerPoint, etc.

  • Provide copies of all documents going to participants or potential participants

  • Answer questions – receive verbal feedback

  • Written feedback form – summarizing all responses, sent to PI within 10 days.

Center for Minority Health,Graduate School of Public Health, University of Pittsburgh


Some areas of research

Adolescent Depression

Post-Partum Depression

Children and Type II Diabetes

Gay Women – Health

Environmental Justice

Pediatrics – Vitamin D

Emergency Medical Services

Prostate Cancer

Preventing Infections during Pregnancy

Mental Health – Facial Disorders

Chronic Disease Instrument

Recruiting Women into Clinical Trials for Depression Treatment

HIV/AIDS – Women 50+

Symptom Management in Metastasized Cancer

Acupuncture Treatment of Menopause in Cancer Survivors

Some Areas of Research

Center for Minority Health,Graduate School of Public Health, University of Pittsburgh


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Freimuth et al., 2001 suggests that one crucial first step to improving the trust of African Americans in research would be to develop a comprehensive communication campaign about research.

Excellence In Partnership, Outreach, Research & Training

-Education Series-

Overcoming Barriers to Recruitment and Retention of Racial and Ethnic Minority Populations in Medical and Public Health Research

Community Based Participatory Research

Involving Communities in Research: The Role of Community Advisory Boards

Creating and Sustaining a Community Advisory Board: 20 years of Lessons Learned

Center for Minority Health,Graduate School of Public Health, University of Pittsburgh


Leadership is critical

LEADERSHIP IS CRITICAL

Center for Minority Health,Graduate School of Public Health, University of Pittsburgh


Co chairs

Co-Chairs

Dr. Stephen B. Thomas, CMH Director

Philip Hallen Professor of Community Health and Social Justice

Dr. Jeannette South-Paul, Chair

Department of Family Medicine

University of Pittsburgh

Medical Director, UPMC

Division of Community Health Services

Mr. Wilford Payne, Co-Chair

Executive Director

Primary Health Care Services, Inc.

(A Chain of Federally Funded Health Centers)

Center for Minority Health,Graduate School of Public Health, University of Pittsburgh


Acknowledgements

ACKNOWLEDGEMENTS

Members of the CRAB

Center for Minority Health Faculty, Staff & Students

with special thanks to Maya Gist & Veronica Sansing

Principal Investigators who support the CRAB

financially and in spirit and who seek our input

&

We gratefully acknowledge the support of the

National Center for Minority Health & Health Disparities

EXPORT Grant #: 5P60MD000207-03

Center for Minority Health,Graduate School of Public Health, University of Pittsburgh


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