Community-Based Participatory Research and Research Ethics Institutional Review Boards were designed to protect the interests of individuals, but what about the interests of communities? Our Community-Based Participatory Research (CBPR) & Research Ethics Program seeks to address this issue through training, technical resources, and open dialogues between communities, academics, research ethics review boards, funders and other key stakeholders.

Partner-to-Partner: Case Stories

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Resources

CCPH and ENACCT Submit Comments on Human Subjects Protection Training and Education Programs

CCPH and the Education Network to Advance Cancer Clinical Trials (ENACCT) responded to a recent request for public comments on the Implementation of Human Subjects Protection Training and Education Programs in response to a request for public comments from the federal Office for Human Research Protections on the topic of human subjects protection training and education programs.

CCPH and ENACCT are spearheading a national federally funded initiative, Communities as Partners in Cancer Clinical Trials: Changing Research, Practice and Policy, which is exploring the potential of employing community-based participatory research (CBPR) principles and approaches to improve multi-site, phase III cancer clinical trials. The initiative's forthcoming report, to be released in October 2008, makes a number of recommendations relevant to the issue of training and education of clinical research teams and Institutional Review Board (IRB) members.

CCPH is also developing a CBPR curriculum for members of IRBs and Research Ethics Boards.

To read the comments submitted by CCPH and ENACCT, click here.

For more information on Communities as Partners in Cancer Clinical Trials, visit http://www.enacct.org/conference/conference.php.

Subscribe to CCPH's CBPR and research ethics electronic discussion group at http://mailman.u.washington.edu/mailman/listinfo/ccph-ethics

Click here for audio files, handouts and proceedings from the 2007 Educational Conference Call Series on Institutional Review Boards & Ethical Issues in Research.

Additional information and resources can be found on our weblinks webpage.

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Get Involved

Interested in joining the discussion on how communities, academics, IRBs and others can work together to develop innovative and collaborative ways to address the ethical challenges of CBPR? Do you want to network with others, and share resources, as well as promising practices with others? If so, please join our listserv.

CBPR and Research Ethics Listserv: This listserv was established to continue the dialogue initiated by the Educational Conference Call Series on Institutional Review Boards (IRBs) and Ethical Issues in Research. Participants are invited to pose questions and share information or resources related to ethical issues that arise in CBPR and challenges encountered in the process of research ethics review.

To join… subscribe at http://mailman.u.washington.edu/mailman/listinfo/ccph-ethics

CBPR and Research Ethics IRB/REB Workgroup and Review/Advisory Committee

Starting in January 2008, the workgroup has been meeting once a month (via conference call) to develop training materials for IRB administrators and committee members on how to review CBPR protocols. Review/advisory committee members will give formal feedback to the workgroup, and help to disseminate the curriculum to local IRBs/REBs. Workgroup and review/advisory committee membership is now closed, but updates on workgroup activities will be posted to this website as they become available.

The Workgroup has gotten off to a running start since their first meeting in January. In addition to defining the curriculum's goals and intended outcomes, the Workgroup has formed several subcommittees to work on several sections and components of the curriculum.

Goals and Intended Outcomes

The overall goals of the curriculum are to educate IRB/REB administrators, chairs and members about:

• The definitions, principles and practices of CBPR
• The benefits of CBPR and its rationale
• CBPR undertaken in unique contexts, settings, and communities (e.g. community health centers; partnerships between community groups and institutions such as universities, hospitals and health departments; Native American/Alaska Native and aboriginal tribes/nations; international)
• Specific ethical issues that arise in the conduct of CBPR (e.g. informed consent, data ownership and management, coordinating protocol reviews with community-based mechanisms for research ethics review such as community-based or tribal IRBs/REBs)

The intended outcomes for the curriculum include the following:

1) IRB/REB administrators, chairs and members are able to:

• Understand what CBPR is and is not
• Articulate the ethical issues that arise in the conduct of CBPR
• Conduct informed ethics reviews of CBPR proposals

2) A diverse cadre of trainers will be developed (reflecting the stakeholders mentioned above) to deliver the curriculum to IRBs/REBs.

The curriculum will include unique training materials and features on CBPR designed specifically for IRB/REBs, including case stories highlighting promising and innovative practices developed by CBPR projects (in regards to ethical issues and challenges) along with lessons learned; resources for IRBs/REBs on how to further educate administrators, chairs, and members about CBPR; and actual examples of CBPR protocols that have undergone IRB/REB review.

Subcommittees/Needs Assessment

Subcommittees have been formed to work on specific aspects of the curriculum, including training components focused on CBPR conducted in unique contexts, settings and communities.

A subcommittee has also been formed to determine how the curriculum might best be delivered and administered to IRBs/REBs, and has developed a needs assessment for IRB/REB chairs and administrators that will help elicit this information. By asking about IRB/REBs' understanding of CBPR, the extent to which they are already reviewing CBPR protocols, and what IRB/REBs' needs are with regards to a CBPR-focused training curriculum, the Working Group will be able to design a curriculum that is responsive to the needs of IRBs/REBs and delivered in convenient formats and settings.

Contact CCPH at ccphuw@u.washington.edu or (206) 666-3406 for more information on Workgroup and Review/Advisory Committee activities.

Workgroup Members

Patricia Alt
Professor
Towson University
Towson, MD

Vivian Carter (Workgroup Co-Facilitator)
Assistant Director for Community Partnerships
Tuskegee Bioethics Center, Tuskegee University
Tuskegee, AL

Sherry Ann Chapman
Research Associate and Manager
Community-University Partnership for the Study of Children, Youth, and Families (CUP)
Edmonton, Alberta, Canada

Amy Davis
Program Director
Public Responsibility in Medicine and Research (PRIM&R)
Boston, MA

Linda Delaney
Evaluator, University of Arkansas at Pine Bluff and the Arkansas
Department of Health
Marion, AR

Milton "Mickey" Eder
Access Community Health Network
Chicago, IL

Ramona Fillman
Research Coordinator
Shriners Hospital for Children
Honolulu, HI

Anthony Fleg
Medical Student
University of North Carolina
Chapel Hill, NC

Laurie Hassell
Regional Manager
Northwest Association for Biomedical Research (NWABR)
Seattle, WA

Loretta Heuer
Professor
University of North Dakota, College of Nursing
Grand Forks, ND

Pattie King
Cancer Advocate/Program Coordinator
Licensed Practical Nurse
Cancer Support Services
Hu Hu Kam Memorial Hospital
Gila River Indian Community, Arizona

Pam Kohal
Program Coordinator II
Medical College of Wisconsin
Milwaukee, WI

Lucie Lévesque
Assistant Professor
Queen's University
Kingston, Ontario, Canada

Mary Anne McDonald
Assistant Professor
Division of Community and Family Medicine
Director of Faculty Training
Duke Center for Community Research
Duke University Medical Center
Durham, NC

Patrick McShane
Director of Special Projects
Beaufort-Jasper-Hampton Comprehensive Health Services, Inc. (BJHCHS)
Ridgeland, South Carolina

Marjie Mogul
Director of Research
The Maternity Care Coalition
Philadelphia, PA

Maghboeba Mosavel
Faculty Member
Case Western University
Center for Reducing Health Disparities
Cleveland, OH

Lisa Moy
Graduate Research Assistant
Community-Campus Partnerships for Health
Seattle, WA

Dianne Quigley
Adjunct Instructor
Project Director
Syracuse University
Research Ethics and Environmental Health
Syracuse, NY

Menraj Sachdev
Program Development and Quality Manager
Child Family Health International (CFHI)
San Francisco, CA

Roy Sahali
National Network of Libraries of Medicine
Pacific Northwest Region(NNLM/PNR)
University of Washington
Seattle, WA

Carolina Gonzalez-Schlenker
Consultant
Milwaukee, WI

Beatrice Clark Shelby
Executive Director
Boys, Girls, Adults Community Development Center (BGACDC)
Marvell, AR

Peggy Shepard
Executive Director
West Harlem Environmental Action, Inc. (WE ACT)
New York City, NY

Nancy Shore
Assistant Professor
School of Social Work
University of New England
Portland, Maine
CCPH Senior Consultant

Stephen Sodeke
Director
Tuskegee Bioethics Center
University of Tuskegee
Tuskegee, AL

Bessa Whitmore
Professor (Retired)
School of Social Work
Carleton University
Ottawa, Ontario, Canada

Kristine Wong (Workgroup Co-Facilitator)
Program Director
Community-Campus Partnerships for Health
Seattle, WA

Bernard Young
PhD Student, Department of Education
University of Cincinnati
Cincinnati, OH

Review/Advisory Committee Members

Amoké Alakoyé
RTI International
Rockville, MD

Emily Anderson
Univ. of Illinois - Chicago
Chicago, IL

Judith Anderson
Environmental Justice Action Group of WNY
Buffalo, NY

Kelly Bannister
University of Victoria
Victoria, BC, Canada

Michelle Berlin
Oregon Health & Science University
Portland, OR

Margaret Butler
University of Texas Health Science Center, Houston
Houston, TX

Diana Chingos
University of California/Kenneth T. Norris Comprehensive Cancer Center
Los Angeles, CA

Michele Curtis
University of Texas
Humble, TX

Ken Fornataro
AIDS Treatment Data Network
New York, NY

Dwana Green
Louisiana Department of Health and Hospitals
Marrero, LA

Patricia Holkup
Montana State University
Missoula, MT

Layne Humphrey
Johns Hopkins Bloomberg School of Public Health
Baltimore, MD

Carmen Julious
Palmetto AIDS Life Support Services
Columbia, SC

Robin Gaines Lanzi
Georgetown University Center on Health and Education
Washington, DC

Danielle LaBorde
HERMES, LLC/Office for Research and Empowerment
Wilmington, NC

Debra Long
Area L AHEC-Heath Departments in NC
Rocky Mount, NC

Shannon Marsh
FORCE
Seattle, WA

Drew McCormick
Loyola University of Chicago
Guilford, CT

Melva Lisa McDonald McGee
Meharry Medical College HBCU Wellness Project
Nashville, TN

Beverly Pigman
Navajo Nation Human Research Review Board, Navajo Community College
Kayenta, AZ

Robert Reinhard
Morrison & Foerster
San Francisco, CA

Renee Royak-Schaler
Department of Epidemiology & Preventative Medicine, University of Maryland School of Medicine
Baltimore, MD

Desi Sims
University of Arkansas Medical School
Fayetteville, AK

Lisa Rey Thomas
Alcohol and Drug Abuse Institute, University of Washington
Seattle, WA

Marlene M. von Friederichs-Fitzwater
University of California, Davis, School of Medicine
UC Davis Cancer Center Outreach Research and Education Program;
Sacramento, CA

Catherine Woodstock Striley
Washington University School of Medicine
St. Louis, MO

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