CCPH - Partnership Matters Newsletter

The 2005 Conference on Research Universities and Civic Engagement was co-convened by Campus Compact and the Jonathan M. Tisch College of Citizenship and Public Service at Tufts University. A report from the conference has just been published, entitled "Report on New Times Demand New Scholarship: Research Universities and Civic Engagement: A Leadership Agenda." The report includes a rationale for engaged scholarship as well as recommendations for what research universities can do to advance civic engagement at their institutions and across higher education. The report is available at http://www.compact.org/initiatives/research_universities/

One of the outcomes of the conference is a network of research universities formed to promote civic engagement being coordinated by Campus Compact. These institutions attended the conference and are involved in the network: Duke University, Stanford University, Tufts University, University of California-Los Angeles, University of Maryland, University of Massachusetts-Amherst, University of Michigan, University of Minnesota, University of Pennsylvania, University of Southern California, University of Utah, University of Wisconsin and Vanderbilt University

For more information about community-engaged scholarship, visit
http://depts.washington.edu/ccph/scholarship.html

Visit the Community-Engaged Scholarship Toolkit, designed to help community-engaged faculty members make their best case for promotion and/or tenure at http://www.communityengagedscholarship.info

To download the report "Linking Scholarship and Communities: Report of the Commission on Community-Engaged Scholarship in the Health Professions," visit http://depts.washington.edu/ccph/kellogg3.html or
http://depts.washington.edu/ccph/pdf_files/Commission%20Report%20FINAL.pdf

NOVEMBER 2006 ISSUE OF Journal of Urban Health:

Theme SECTION on Challenges of COMMUNITY-BASED PARTICIPATORY RESEARCH

Theme Issue Grew from Discussion on CBPR Listserv

In July 2005, a stream of comments were posted on the Community-Based Participatory Research (CBPR) listserv co-sponsored by CCPH and the Wellesley Institute conveyed members’ solid interest in seeing more written publications articulate the challenges of CBPR. In particular, listserv members described a paucity of CBPR literature that explicitly discussed challenges of the CBPR process, defines “failures,” and as a result, draws upon their lessons. It was acknowledged that while neither institutional nor community partners would normally wish to characterize their CBPR efforts as having “failed,” listserv members also described potential benefits: specifically, they called for well-written CBPR processes that could yield broader lessons for emerging and established CBPR partnerships.

After an exchange of possible explanations for the lack of published articles on challenges, it was generally agreed that to effectively enhance the practice and literature of CBPR, that a “manuscript [must be] of broad interest to the readership” beyond “describing a single program’s trials and tribulations.” Listserv members also suggested journals that might be receptive to articles that highlighted CBPR challenges: the Journal of Urban Health topped the list. CCPH executive director Sarena D. Seifer and Sarah Sisco of the New York Academy of Medicine subsequently sought and received approval from the journal editor to co-edit a theme section on CBPR challenges. It is a modest attempt to close the gap in our understanding of the challenges encountered in CBPR and strategies for overcoming them.

Four papers that comprise the theme section candidly report on the trials and tensions faced by their CBPR partnerships, and steps they have taken to mitigate their effects. Along with an accompanying editorial, the section offers hope for realizing the promise of CBPR as a strategy for improving urban health. CCPH members and staff are indicated in blue.

Mining the Challenges of CBPR for Improvements in Urban Health, by Sarena D. Seifer and Sarah Sisco

Building and Sustaining Community-Institutional Partnerships for Prevention Research: Findings from a National Collaborative, by The Examining Community-Institutional Partnerships for Prevention Research Group

(see related evidence-based CBPR curriculum developed by this Group at www.cbprcurriculum.info)

The Art and Science of Integrating Undoing Racism with CBPR: Challenges of Pursuing NIH Funding to Investigate Cancer Care and Racial Equity, by Michael A. Yonas, Nora Jones, Eugenia Eng, Anissa I. Vines, Robert Aronson, Derek M. Griffith, Brandolyn White and Melvin DuBose

Challenges of Conducting Community-Based Participatory Research in Boston’s Neighborhoods to Reduce Disparities in Asthma, by Elmer R. Freeman, Doug Brugge, Willie Mae Bennett-Bradley, Jonathan I. Levy and Edna Rivera Carrasco

Challenges and Facilitating Factors in Sustaining Community-Based Participatory Research Partnerships: Lessons Learned from the Detroit, New York City and Seattle Urban Research Centers, by Barbara A. Israel, James Krieger, David Vlahov, Sandra Ciske, Mary Foley, Princess Fortin, J. Ricardo Guzman, Richard Lichtenstein, Robert McGranaghan, Ann-Gel Palermo and Gary Tang

To view abstracts and articles, visit http://www.springerlink.com/content/x326h5u74208/

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MESSAGE FROM OUR EXECUTIVE DIRECTOR

Sarena Seifer

CCPH members have consistently expressed interest in learning more about human subjects protections, the institutional review board (IRB) process, and the options for getting involved in assuring that research in their communities is ethical and appropriate. They have indicated, for example, the difficulties involved in getting community-based participatory research (CBPR) projects through the IRB review process. They have expressed concerns that IRBs, while offering individual protections for research participants, do not actually offer protection for the communities in which the research is taking place. Some have opted to further community protections by forming community advisory boards and independent community IRBs.

In their paper, “Community-Academic Partnerships and Institutional Review Board Insights,” appearing in the Winter 2007 issue of Partnership Perspectives, Sarah Beversdorf, Syed Ahmed and Barbra Beck report on their presentation from the last CCPH conference and the audience discussion that ensued (see http://depts.washington.edu/ccph/PP.html). They propose two potential roles for CCPH in addressing the issues raised: education and technical assistance. I am pleased to report we are moving ahead on both fronts, beginning with a conference call series set to start next month.

CCPH’s Educational Conference Call Series on IRBs is intended to guide our members and others who are interested in 
understanding the role of IRBs and other mechanisms for assuring that human subjects research is ethical and appropriate—
both at individual and community levels.  We hope the series will provide our members with a comprehensive understanding of 
the options and tools necessary to determine the approach that is best for their communities.  The series will also inform the 
development of future CCPH initiatives on IRBs and ethical issues in community-campus partnerships.  At the conclusion of the 
series, we intend to initiate a discussion among those interested in helping to determine our next steps.

Below is information about the calls in the series.  Registrations will be taken for each call on a first-come, first-served basis, 
with priority given to members of CCPH.  To maximize participation, we encourage you to gather colleagues to dial-in together 
using one phone line.   Registration is now open for the first two calls in the series.  Registration information for subsequent 
calls in the series will appear in future issues of Partnership Matters and on the CCPH website at www.ccph.info.

Prior to each call, handouts and instructions for dialing in will be emailed to confirmed registrants. All others who complete 
the online form will be emailed the handouts and information about their status on a wait list.   Handouts and digital audiofiles 
will be posted on the CCPH website at www.ccph.info shortly after each call takes place.

We welcome your comments and suggestions on the call series, as well as for any additional calls

you'd like to see.  Please email your ideas to CCPH program director Kristine Wong or CCPH Graduate Research 
Assistant Jessica Grignon, who are organizing the call series, at kristine@u.washington.edu or jgrignon@u.washington.edu

For additional resources on IRBs and CBPR, please visit these sections on the CCPH website:

Ethics and IRBs weblinks: http://depts.washington.edu/ccph/links.html#Ethics

CBPR principles and policies: http://depts.washington.edu/ccph/commbas.html#Principles

CCPH EDUCATIONAL CONFERENCE CALL SERIES ON IRBs

Tentative Schedule – Subject to Change

Acronyms used:

CBPR = community-based participatory research

IRB = institutional review board

Call #1 - IRB 101: What is an Institutional Review Board and What Purpose Does it Serve?

February 14, 2007, 12:00 to 1:30 p.m. Pacific Standard Time

The Belmont Principles, Nuremberg Code, and protection of human subjects
How and why IRBs were established
How IRBs function today, including how many “community” members are required to serve and what roles they play
The pros and cons of the IRB process, but why it is ultimately important

Speakers:

Shirley Hicks, Director, Division of Education and Development, Office for Human Research Protections (OHRP), U.S. Department of Health and Human Services (DHHS), Rockville, Maryland
Bill Freeman, Director of Tribal Community Health Programs & Human Protections Administrator, Northwest Indian College, Bellingham, Washington

During this call, Shirley Hicks will discuss some of the unethical research projects that strongly influenced the subsequent development of HHS regulations to protect the rights and welfare of human research subjects. She will also provide a brief review of how OHRP continues to strengthen HHS-supported human subject research and share resources available. Bill Freeman will present federal regulations and their applicability by using a case example of diabetes screening within a community setting.

To register for this call, complete the online registration form at https://catalysttools.washington.edu/survey/kristine/31944

Call #2 - Elevating the Role of the Non-Affiliated (Community) IRB Member

March 14, 2007, 12:00 to 1:30 p.m. Pacific Standard Time

The role of community members on IRBs
How community member roles can go beyond reviewing consent forms—the importance of the perspective and expertise they bring to IRBs
How to improve communication between IRBs and communities

Speakers:

Elda Railey, Co-Founder, Research Advocacy Network, Arlington Heights, Illinois
Mary Lou Smith, Co-Founder, Research Advocacy Network, Arlington Heights, Illinois
Lucille Webb, Director, Strengthening the Black Family, Raleigh, North Carolina and North Carolina State Department of Public Health IRB Non-Affiliated (Community) Member
Gigi McMillan, Director, We Can Pediatric Brain Tumor Network, Los Angeles, California and University of California – Los Angeles IRB Non-Affiliated (Community) Member

To register for this call, complete the online registration form at https://catalysttools.washington.edu/survey/kristine/31948

Call #3 - Community-Based Participatory Research Proposals and the Human Subjects Review Process: Methods for Working with University IRBs

Wednesday, April 18, 2007, from 12:00 - 1:30 p.m. Pacific Standard Time

This call will cover:

Promising practices and helpful tips for getting IRB approval for CBPR projects
Methods for developing an understanding of CBPR among IRBs
Models for moving CBPR through the University IRB process, including CBPR projects conducted by students
How to improve communication between IRBs and CBPR practitioners

Speakers:

Sherril Gelmon, Professor of Public Health, Mark O. Hatfield School of Government, Portland State University, Portland, Oregon
Ruth Malone, Professor, School of Nursing, University of California – San Francisco, San Francisco, California
Elleen Yancey, Director, Morehouse University School of Medicine Prevention Research Center, Atlanta, Georgia

To register for this call, complete the online registration form at
https://catalysttools.washington.edu/survey/ccphuw/33262

Call #4 - Beyond the University IRB: Understanding Alternative Models for Human Protection, Part I: Supplementing the IRB for Community Protection with a Community Advisory Board

Date, time and speakers TBA

Introduction to the wide range of human protections options developed by community-based organizations and CBPR partnerships – from Community Advisory Boards that supplement University IRBs to independent Community Review Boards
Examples of Community Advisory Boards that have been created for additional protections for the community, but work collaboratively with University IRBs

Why and how these entities were created
How these entities function and what purposes they serve

How and when to develop a Community Advisory Board

Call #5 - Beyond the University IRB: Understanding Alternative Models for Human Protections, Part II: Creating an Independent Community IRB—When is it Right for You?

May 24, 2007, from 12:00 - 1:30 p.m. Pacific Standard Time

This call will cover:

Review of the wide range of human protections options developed by community-based organizations and CBPR partnerships – from Community Advisory Boards that supplement University IRBs to independent Community Review Boards
Examples of independent Community IRBs that have been created to serve the needs of their communities
- Why and how these entities were created
- How these entities function and what purposes they serve
How and when to develop an independent Community Review Board
Community ownership of data and benefits from research – how does this differ between Community IRBs and University IRBs?

Speakers:

Sheila Beckham, Preventive Health Services Director, Waianae Coast Comprehensive Health Center, Waianae, Hawaii
Bill Freeman, Director of Tribal Community Health Programs & Human Protections Administrator, Northwest Indian College, Bellingham, Washington
Jacqueline Tran, Program Manager, Orange County Asian and Pacific Islander Community Alliance, Garden Grove, California
Eric Wat, Data Manager, Special Services for Groups, Los Angeles, CA

Call #6 - IRB Reform: Changing Policy and Practice to Protect Communities

Monday, June 25, 2007, 12:00 - 1:30 p.m. Pacific Standard Time

This call will cover:

§ Findings from recent studies of IRBs and CBPR

§ Do IRB policies and practices adequately protect communities? How should they be changed?

§ Ideas and recommendations for how IRBs could better protect communities

Speakers:

Syed Ahmed, Director of the Center for Healthy Communities (CHC) & Professor of Family and Community Medicine, Medical College of Wisconsin, Milwaukee, WI
Sarah Beversdorf, Rural Health Liaison for the Healthier Wisconsin Partnership Program, Medical College of Wisconsin, Milwaukee, Wisconsin
Sarah Flicker, Assistant Professor, York University, Toronto, Ontario, Canada
Robb Travers, Scientist and Director of Community-Based Research, Ontario HIV Treatment Network, Toronto, Ontario, Canada
Nancy Shore, Assistant Professor at the University of New England School of Social Work, Portland, Maine

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NEWS FROM CCPH

CCPH 10^th Anniversary Conference

April 11–14, 2007, Toronto

Mobilizing Partnerships for Social Change

New Announcements:

· Online Registration Now Open! Register today at http://depts.washington.edu/ccph/conf-registration.html

· Book Your Hotel Room Today! Details at http://depts.washington.edu/ccph/conf-accom.html#Hotel

· Call for Toronto-Area Community Site Visits – Applications Accepted on a Rolling Basis More information is available at http://depts.washington.edu/ccph/conf-sitevisits.html

· Preliminary Program Now Online! Abstracts of all sessions and posters included! To download the preliminary program, visit http://depts.washington.edu/ccph/conf-agenda.html