Appendices

Community-Based Participatory Research: Conference Summary

Appendix A. Summary of Comments Submitted by Participants

Conference organizers distributed color-coded index cards to participants. Throughout the conference, participants submitted the cards with questions relating to the community, academic, and funding sessions. Unedited participant remarks can be obtained from conference organizers.

The following section summarizes participant comments.

Community Session

• Racism and discrimination continue. Historical and current discrimination has resulted in an imbalance of power. How do we change institutions, transfer power to communities, and address these issues up front?
• How do we alleviate CBO concerns about being used as research study recruitment agencies?
• How can communities ensure full representation in CBPR given that CBOs, high-visibility gatekeepers, and community activists do not necessarily represent the entire community?
• How do we train communities in: research skills, technology use, grant writing, and publishing?
• How do we resolve data ownership, intellectual property, and authorship issues given an imbalance of power between academic institutions and communities?
• How does CBPR deal with difficulties developing consensus within stakeholder groups, competition and conflicts of interest within communities, and power imbalances among community constituents?
• How do we bridge the culture gap between science and the community given exclusionary language and structures?
• How do we best publicize CBPR, disseminate CBPR results, and convince funders of CBPR's value?
• How can communities sustain gains and capacity? Can this only be accomplished if CBPR advances economic development and social justice?

Academic Session

• How can academic institutions change their culture to be more flexible, extend CBPR to health professional schools, and learn from the community?
• How can we increase the acceptance (perceived value and rigor) of CBPR among academicians?
• How can academic institutions encourage and mentor faculty who conduct CBPR?
• How can academic institutions educate IRB panelists and increase community membership on IRBs?
• How can the academic community help identify benchmarks for CBPR excellence and use these in tenure and promotion decisions?
• How can the academic community increase the number of minority researchers conducting CBPR?
• How can traditional universities and smaller academic institutions sustain CBPR?
• How can academic institutions address the special needs of female faculty?

Funding Session

• How can we persuade NIH of CBPR's value?
• How can we disseminate information about CBPR funding opportunities and models for various approaches?
• How can the grant making process be changed so that it is more open to comprehensive approaches such as CPBR? How can we communicate CBPR review criteria to funders?
• How can communities obtain funding for infrastructure needs?
• How can Federal agencies increase collaboration and communication regarding their CBPR projects?
• How can the CBPR approach compete for funding with the medical-industrial complex?
• What structural changes could be made within funding organizations that might facilitate acceptance of CBPR?

Appendix B. Summary of Greatest Hopes and Fears

Each participant posted his or her greatest hope and fear regarding CBPR and conference outcomes. Appendix B presents these as participants wrote them.

The following section summarizes participant hopes and fears.

Greatest Hopes

• To develop measures for its effectiveness, partnerships, and social determinants of health.
• To make network connections, begin collaborations, and share information.
• To advance recognition and understanding of the community perspective within CBPR.
• To obtain funding or information on funding.
• To change the Federal research agenda/priorities so as to eliminate disparities.
• To obtain knowledge about good CBPR models.
• To develop a successful journal supplement from the conference.

Greatest Fears

• All talk and no action resulting in maintaining the status quo.
• Failure to address inequitable/oppressive structural/institutional systems.
• No followup or sustained action after the conference.
• No funding support for CBPR.
• "Bashing" of other perspectives.
• Lack of focus on outcomes and building capacity.
• Large academic institutions seen as only viable organizations to conduct CBPR.
• Lack of specific multicultural CBPR initiatives.

Appendix C. Final Participant List

Syed M. Ahmed, M.D., M.P.H., Dr.P.H.
Associate Professor
Department of Family and Community Medicine
Center for Health Communities
Medical College of Wisconsin
Milwaukee, WI

Lynda A. Anderson, Ph.D.
Acting Program Director
Prevention Research Center
Centers for Disease Control and Prevention
Atlanta, GA

Carol M. Ashton, M.D., M.P.H.
Director
Houston Center for Quality of Care and Utilization Studies (HCQCUS)
Health Services Research & Development
Houston, TX

Eric Bailey, Ph.D., M.P.H.
National Center on Minority Health and Health Disparities
National Institutes of Health
Bethesda, MD

Beth Baker, Ph.D., M.P.H.
Associate Professor
School of Public Health
Saint Louis University
St. Louis, MO

Eric B. Bass, M.D., M.P.H.
Editor
Journal of General Internal Medicine
Baltimore, MD

Carolyn Beeker, Ph.D.
Chief, CBPARA/Director
Urban Research Centers
Epidemiology Program Office
Division of Prevention Research and Analytic Methods
Centers for Disease Control and Prevention
Atlanta, GA

Marlene Berg
Associate Director for Training Research and Development
Institute for Community Research
Hartford, CT

Kassahun Bisrat
Executive Director
Alliance for Multicultural Community Services
Houston, TX

Angela Glover Blackwell, J.D.
President
PolicyLink
Oakland, CA

Lee R. Bone, M.P.H.
Associate Public Health Professor
Bloomberg School of Public Health
Johns Hopkins University
Baltimore, MD 21205

Beth Bowers, M.Div., M.S.W.
Social Science Analyst
Division of Services & Intervention Research
National Institute of Mental Health
Bethesda, MD

Pauline E. Brooks, Ph.D.
Manager of Evaluation
California Endowment Foundation
Woodland Hills, CA

Helen Burstin, M.D., M.P.H.
Director
Center for Primary Care Research
Agency for Healthcare Research and Quality
Rockville, MD

Timothy S. Carey, M.D., M.P.H.
Professor of Medicine
Director, Cecil G. Sheps Center for Health Services Research
University of North Carolina at Chapel Hill
Chapel Hill, NC

Marshall H. Chin, M.D., M.P.H.
Associate Professor of Medicine
University of Chicago
Chicago, IL

Jill Chopyak
Executive Director
The Loka Institute
Amherst, MA

Toby Citrin, J.D.
Director
Office of Community-Based Public Health
School of Public Health
University of Michigan
Ann Arbor, MI

Carolyn M. Clancy, M.D.
Director
Center for Outcomes and Effectiveness Research
Agency for Healthcare Research and Quality
Rockville, MD

William Cunningham, M.D., M.P.H.
Department of Medicine and Health Services Research 31-254A CHS
Division of General Internal Medicine and Health Services Research
UCLA School of Public Health
UCLA School of Medicine
Los Angeles, CA

Cathy Deeds
Special Assistant
Center for Faith-Based and Community Initiatives
U.S. Department of Health and Human Services
Washington, DC

Kay W. Eilbert
President
Metropolitan Washington Public Health Association
Alexandria, VA

Iris Farabee-Lewis, D.D.
Centennial Caroline Street United Methodist Church
Baltimore, MD

Kaytura Felix-Aaron, M.D.
Center for Primary Care Research
Agency for Healthcare Research and Quality
Rockville, MD

Benjamin Fraticelli
Executive Director
Community Health Academy
Oakland, CA

Ann Wilson Frederick
Exceed Community Partnership
Rosebud Field Office
Mission, SD

William L. Freeman, M.D., M.P.H.
Director
Indian Health Service Research Program
Chair, Headquarters—Albuquerque Area Combined Indian Health Service IRB
Rockville, MD

Vanessa Northington Gamble, M.D., Ph.D.
Vice President
Division of Community and Minority Programs
Association of American Medical Colleges
Washington, DC

Aida L. Giachello, Ph.D.
Center Director and Associate Professor
Midwest Latino Health Research, Training, and Policy Center
Jane Addams College of Social Work
Chicago, IL

Junius J. Gonzales, M.D.
Chief, Services Research & Clinical Epidemiology Branch
Rockville, MD

Lawrence W. Green, Dr.P.H.
Director
Office of Extramural Prevention Research
Public Health Practice Program Office
Centers for Disease Control and Prevention
Atlanta, GA

Barbara J. Hatcher, Ph.D., M.P.H., R.N.
Director, Scientific and Professional Affairs
American Public Health Association
Washington, DC

Corliss Heath, M.P.H.
Program Coordinator
Program for Healthcare Effectiveness Research
Morehouse School of Medicine
Atlanta, GA

W. David Helms, Ph.D.
President and CEO
Academy for Health Services Research and Health Policy
Washington, DC

Carol Horowitz, M.D., M.P.H.
Exceed Grantee
Department of Health Policy
Mount Sinai School of Medicine
New York, NY

Dan Hoskins, M.A.
Department of Biometry and Epidemiology
Medical University of South Carolina
Charleston, SC

Barbara Israel, Dr.P.H.
Professor
Department of Health Behavior and Health Education
School of Public Health
University of Michigan
Ann Arbor, MI

Joni Johns
Office of Information Technology
Opportunity Portal for Low Income People Team
Health Resources and Services Administration
Rockville, MD

Kit Johnston
Writer, Editor, Project Manager
Food and Wine Specialist
Arlington, VA

Thomas Kelly, Jr.
Senior Research Associate
The Annie E. Casey Foundation
Baltimore, MD

Raynard Kington, MD
Office of Behavioral and Social Sciences
National Institutes of Health
Bethesda, MD

David Korn, M.D.
Senior Vice President
Association of American Medical Colleges
Washington, DC

Barbara Krimgold
Senior Project Director
Center for the Advancement of Health
Washington, DC

Sharon M. Lee
Professor and Director, Graduate Studies
Department of Sociology
Portland State University
Portland, OR

Marsha Lillie-Blanton, Dr.P.H.
Vice President in Health Policy
The Henry J. Kaiser Family Foundation
Washington, DC

Barbara Major
Executive Director
St. Thomas Health Services
New Orleans, LA

Spero M. Manson, Ph.D.
Professor and Head
American Indian and Alaska Native Programs/Department of Psychiatry
University of Colorado Health Services Center
Denver, CO

Lori Minasian, M.D., F.A.C.P.
Chief
Community Oncology and Prevention Trials Research Group
Division of Cancer Prevention
National Cancer Institute
National Institutes of Health
Bethesda, MD

Mary E. Northridge, Ph.D., M.P.H.
Editor-in-Chief
American Journal of Public Health
Deputy Director
Harlem Health Promotion Center
Department of Sociomedical Sciences
Mailman School of Public Health of Columbia University
New York, NY

Phil Nyden, Ph.D.
Professor of Sociology
Director of Center for Urban Research and Learning
Chicago, IL

Thomas P. O'Toole, M.D.
Associate Director
Urban Health Institute
Johns Hopkins University
Baltimore, MD

Leslie Oblak
Research Associate
Access Project
Brandeis University
Waltham, MA

Guadalupe Pacheco, J.D.
Special Assistant to the Deputy Assistant Secretary for Minority Health
Office of Minority Health
Rockville, MD

Herminia Palacio, M.D., M.P.H.
Assistant Professor
Health Services Research & Development
Houston, TX

Ann-Gel S. Palermo, M.P.H.
Research Assistant
Institute for Medicare Practice
Mount Sinai School of Medicine
New York, NY

Carol Bryant Payne. R.N.
Community Builder Fellow
Office of the State Coordinator, Senior Community Builder
U.S. Department of Housing and Urban Development
Baltimore, MD

Delores L. Perron, Ph.D.
Scientific Advisor for Capacity Development
Office of the Director
National Institutes of Health
Bethesda, MD

Wendy Perry, M.P.A.
Senior Program Analyst
Agency for Healthcare Quality and Research
Rockville, MD

Marj Plumb
Marj Plumb and Associates
Richmond, CA

Clifton A. Poodry, Ph.D.
Director
Minority Opportunities in Research
National Institute of General Medical Sciences
National Institutes of Health
Bethesda, MD

Rebeca Ramos, M.P.H., M.A.
Technical Director
U.S. Mexico Border Health Association
El Paso, TX

Donna Rathbone
National Center on Minority Health and Health Disparities
National Institutes of Health
Bethesda, MD

LaVerne Reid, Ph.D., M.P.H.
Chair
Department of Health Education
North Carolina Central University
Durham, NC

Candia Richards, M.P.H.
Director of Prevention Programs
Community Health
Bronx AIDS Services
Bronx, NY

Patricia L. Riley, C.N.M., M.P.H.
Director CARE-CDC Health Initiative
Office of Global Health
Centers for Disease Control and Prevention
Atlanta, GA

Mary C. Roary, M.H.S.
Faculty Associate, Co-Investigator and Project Director
Johns Hopkins University School of Nursing
Baltimore, MD

Gladys Sandlin
Executive Director
Mission Neighborhood Health Center
San Francisco, CA

Sari Siegel
Staff Service Fellow
Center for Primary Care Research
Agency for Healthcare Research and Quality
Rockville, MD

Philip L. Smith, M.D., M.P.H.
Office of Program Support
Indian Health Service
Rockville, MD

Selina A. Smith, Ph.D.
Scientific Director
National Black Leadership Initiative
on Cancer II: Network Project
Morehouse School of Medicine
Atlanta, GA

Lisa Cacari Stone
Santa Fe, NM

Daniel Stryer, M.D.
Center for Outcomes and Effectiveness Research
Agency for Healthcare Research and Quality
Rockville, MD

Barbara C. Tilley, Ph.D.
Professor and Chair
Department of Biometry & Epidemiology
Medical University of South Carolina
Charleston, SC

Anh N. Tran, M.P.H.
EXCEED Program Grant Coordinator
Houston Center for Quality of Care and Utilization Studies
Houston, TX

Jeanette Trauth, Ph.D.
Assistant Professor
Department of Health Services Administration Graduate School of Public Health
University of Pittsburgh
Pittsburgh, PA

Henrie M. Treadwell, Ph.D.
Program Director
W. K. Kellogg Foundation
Battle Creek, MI

Pattie Tucker, R.N., M.P.H.
Evaluation Coordinator
REACH 2010
Centers for Disease Control and Prevention
Atlanta, GA

Robin Tucker, J.D.
Imagine Consulting
Oakland, CA

Lorraine Valdez, B.S.N., M.P.A., C.D.E.
Nursing Consultant
Indian Health Service
National Diabetes Program
Albuquerque, NM

Carmen M. Villegas, M.A.
Community Board 11-East Harlem Area Council
New York, NY

A. Eugene Washington, M.D., M.Sc.
Director of MERC
University of California, San Francisco
San Francisco, CA

Lucille H. Webb
President
Strengthening The Black Family, Inc.
Raleigh, NC

Robin M. Weinick, Ph.D.
Director
Intramural Research
Center for Primary Care Research
Agency for Healthcare Research and Quality
Rockville, MD

Tony L. Whitehead, Ph.D.
Professor
Department of Anthropology
University of Maryland
College Park, MD

Karen P. Williams, Ph.D.
Assistant Professor
Obstetrics, Gynecology and Reproductive Biology
Michigan State University
East Lansing, MI

Malcolm Williams, M.P.P.
Senior Program Associate
Grantmakers In Health
Washington, DC

Mattie S. Woods
Executive Director
Centers for Healthy Hearts and Souls
Pittsburgh, PA

John Zinsser
Ombuds
Agency for Healthcare Research and Quality
Rockville, MD