 |
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
|

Gigi McMillan
Founder and Executive Director
We Can, Pediatric Brain Tumor Network
|
I wear a lot of hats. We Can - Pediatric Brain Tumor Network is
a non-profit organization based in Los Angeles. We empower families
to manage their medical situation and to become part of the "process"
as their children go through treatment. There are almost 600 families
in the We Can Network in California. I'm also on two IRBs at the
University of California, Los Angeles (UCLA)-one as a community
member and one as a subject representative for the cognitively impaired.
I also sit on the National Cancer Institute's Central Institutional
Review Board (IRB) that reviews children's cancer studies and am
a member of a subcommittee for Secretary's Advisory Committee on
Human Research Protections (SACHRP). UCLA was my first experience
with an IRB and it took me two years before I finally began to feel
comfortable doing my job. Two years is too long of a learning curve.
Read more about Gigi's Story
|
|

Otsehtokon Alex M. McComber and the Kahnawake Schools Diabetes
Prevention Project (KSDPP)
Former KSDPP Training Coordinator
|
As history demonstrates in Indigenous communities: "Outside
research teams swooped down from the skies, swarmed all over town,
asked nosy questions that were none of their business and then disappeared
never to be heard of again." -Louis T. Montour MD, 1987. Kahnawake
embarked upon a community-university partnership to create a program
designed to be a different approach to research-research that would
give back to the community. Read more
about Alex and KSDPP's Story |
|

Sheila Beckham
Preventive Health Services Director Waianae Coast Comprehensive
Health Center
|
The Waianae Coast is home to the fourth largest number of native
Hawaiians in Hawaii and has long been a focus of researchers desiring
to study native Hawaiians, collect data, and leave when funding ends.
In 1990, The Waianae Coast Comprehensive Health Center, a Federally
Qualified Community Health Center, entered into a joint research relationship
with the University of Hawaii's Cancer Research Center to implement
the Waianae Cancer Research Project. The Waianae community established
and published a set of research protocols, principles and guidelines
for participatory research in 1992, and the protocol for the dissemination
and publication of data in 1995 that would guide future community-based
research. Read more about the Sheila's
Story |
back to top
Resources
Additional information and resources can be found on our weblinks
webpage.
back to top
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 https://mailman1.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.
IRB/REB chair or administrators are encouraged to take the needs assessment
online no later than April 18, 2008, at
http://www.surveymonkey.com/s.aspx?sm=L41xZe5ryiXLWGaGdQRe6g_3d_3d
(Note: Please copy the above link into your web browser - do not click
on the link directly). Answering the questions will take less than 10
minutes. If you have questions, please send an email to cbprsurvey@gmail.com.
Contact Kristine Wong (kristine@u.washington.edu),
CCPH Program Director, 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
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
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
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
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
back to top
|