Agenda

8:00 am to 8:30 am       Registration

                                           Posters and Exhibits are Open

8:30 am to 9:00 am       Welcome and Motivational Call to Action

Why Researchers Must Engage the Community

 9:00 am to 10:00 am     Plenary Panel - What is CBPR? - Three Perspectives

Moderator – Sharon Ricks, M.A., Deputy Regional Health Administrator

Academic Perspective - Daniel S. Blumenthal, MD, MPH                                                                                                        Morehouse School of Medicine

10:00 am to 10:45 am    Plenary Panel - Implementing CBPR – What’s Right? What’s Fair?

How Communities Can Position Themselves as Equal Partners                                                                                Gladys Ashe Robinson, PhD  Executive Director                                                 Piedmont Health Services and Sickle Cell Agency                                                     Greensboro, NC

 11:00 am to 11:15 am    Break

Posters and Exhibits are Open

                                           Prepare for and Proceed to Breakout Sessions

11:15 am to 12:00 pm   Concurrent Breakout Session I

REACH: Diabetes & Impact in African American Communities in Charleston                                Carolyn Jenkins, Medical University of South Carolina

Concurrent Breakout Session II

Navigating, Race, Research and Community to Uncover Explanations for Poor Reproductive Outcomes in African American Women

Fleda Mask Jackson, Ph.D.

Concurrent Breakout Session III

CBPR Approach to Middle School Inhalant Use in Georgia Middle School System

Ellen Gerstein, Executive Director

Gwinnet Coalition for Health and Human Services

Lawrenceville, GA

12:00 pm to 1:30 pm     Lunch, ORI Presentation, and Comedy Show (Improv-ination)

                        Flow Productions

                                    Chicago, Illinois

                                    Moderator: John Galland, PhD

                                    Director, Division of Education & Integrity

                                    Office of Research Integrity

U.S. Dept of Health and Human Services

Washington, DC

1:30 pm to 1:45 pm       Break

Posters and Exhibits are Open

                                           Prepare for and Proceed to Plenary Panel

1:45 pm to 2:30 pm       Concurrent Breakout Panel I

Emory Partnership with the GA Cancer Coalition

Johanna M. Hinman, MPH, CHES

Associate Director of Operations

Emory Prevention Research Center

Rollins School of Public Health of Emory University

Atlanta, GA

                                    Concurrent Breakout Panel II

                                    Building Community Coalition toward HIV Prevention

among People of Color in Tennessee

Charles Williams, Ph.D.

Associate Professor/Director

Department of Anthropology

University of Memphis

Memphis, TN

Concurrent Breakout Panel III

Community-based Nursing and Its Effects in Mississippi

Romeatrius Moss, RN, MSN, APHN-BC

Mississippi Gulf Coast Black Nurse Association, Inc.

2:30 pm to 3:15 pm       Concurrent Breakout Panel I

CPBR Resources: Where Can I Go to Learn More?

Sarena Seiffer

                                    Concurrent Breakout Panel II

Ethical Considerations of CBPR: Case Studies

Dr. Vivian L. Carter

Tuskegee Bioethics Center

Posters and Exhibits are Open

                                           Prepare for and Proceed to Plenary Panel

3:30 pm to 4:00 pm       Closing Session

Winning Poster Presentation

Contest Winners Announced and Prizes Distributed

      4:00pm to 4:30 pm        Posters and Exhibits are Open

SUMMARY REPORT

OVERVIEW

The Region IV Department of Health and Human Services (DHHS) and the Atlanta Regional Health Forum (ARHF) convened a one-day Conference entitled QUEST FOR RESEARCH EXCELLENCE, “Partnering with Communities to Improve Health Outcomes” on April 30, 2010.   The conference was designed to bring together stakeholders, policy experts, academics, community organizers, end users, and government officials in a forum for discussion of Community Based Participatory Research (CBPR) and related health outcome issues.  This conference was the first of its kind held in Atlanta as part of the ongoing commitment by the Department of Health Human Services (DHHS) Agency for Healthcare Research and Quality's (AHRQ), whose mission is “to improve the quality, safety, efficiency, and effectiveness of health care for all Americans.”   The intent of research performed by AHRQ is to help people make more informed decisions regarding health care, and improve outcomes and improve the quality of health care services. The planning for this conference began with a request for proposals from the HHS Office of Research Integrity as this agency sought to promote Research Integrity throughout the nation.  In attendance were 139 registered participants. The conference was not externally available; however, copies of all conference presentations are available for dissemination.

Community Based Participatory Research (CBPR) is conducted as an equal partnership between traditionally trained "experts" and members of a community. In CBPR projects, the community participates fully in all aspects of the research process. CBPR projects are initiated within the community they serve. Community is often self-defined, but general categories of community include geographic community, community of individuals with a common problem or issue, or a community of individuals with a common interest or goal. CBPR encourages collaboration of formally trained research partners from any area of expertise, provided that the researchers bring expertise that is seen as useful to the investigation by the community, with the expectation that these research partners are fully committed to a partnership of equals and producing outcomes usable to the community. Equitable partnerships require sharing power, resources, credit, results, and knowledge, as well as, a reciprocal appreciation of each partner's knowledge and skills at each stage of the project, including problem definition/issue selection, research design, conducting research, interpreting results, and determining how the results should be used for action. CBPR differs from traditional research in many ways. One of the principal ways in which it is different is that instead of creating knowledge for the advancement of a field or for knowledge's sake, CBPR is an iterative process, incorporating research, reflection, and action in a cyclical process.

The CBPR approach recognizes the importance of social, political and economic systems to health behaviors and outcomes. Communities are actively engaged throughout the research process. Most importantly CBPR strives to combine knowledge with action to achieve social change, improve health outcomes, and eliminate health disparities.   

The 2010 conference coincided with the passage of the recent Health Care Reform Initiative by Congress and signed into Law by President Obama. Disparity in health care quality and availability, though long an issue, has now begun the process of serious national debate and discussion in order to find plausible solutions and actions to affect the goal of a healthier population with access to quality health care services. The idea of comprehensive health care reform, continued to be, very much, an important topic in both the media and public discourse at the time that the conference was convened.

The conference began with a welcome to the conference by Admiral Clara Cobb, Acting Regional Director of Region IV Department of Health and Human Services and Dr. Douglas Greenwell, Chief Executive Officer or the Atlanta Regional Health Forum, followed by an opening interactive technology assisted feedback session lead by Group Solutions designed to gauge the knowledge and opinions of conference attendees regarding Community Based Participatory Research (CBPR).

GENERAL SESSION

The General Session was comprised of morning plenary sessions dedicated to three CBPR topics: “Why Researchers must engage the Community; A Definition of CBPR; and Implementing CBPR. Each plenary session was structured with a moderator introducing the subject, followed by two or more respondents and a brief question and answer session.  Speakers from federal, academic and community perspectives complemented presentations with interactive discussion. A copy of the complete program agenda is available at the end of this summary. Power point slides from most of the presentations are also added at the conclusion of this summary report.  The presentations are briefly summarized below.

KEYNOTE ADDRESS:

Session Title:           Plenary Keynote and Motivational Call to Action

Session Presenter:     Bill Jenkins, PhD, MPH, University of North Carolina, Chapel Hill

Session Summary:

Dr. Jenkins began the session by stating that “solutions to health disparities are often based on our assumptions about other problems, not on our understanding of health disparities.” He raised the question of why we should do the right thing, positing that, “Rarely do we have the courage to ask the difficult questions”.

There was a discussion of the history of the “Negro Health Movement” and a clarification of role of Tuskegee Institute and the Department of Public Health in the Tuskegee Study of Untreated Syphilis. The Tuskegee Study of Untreated Syphilis was used as an example of the use of Community Based Participatory Research and related the methodology to the basic tenants of bioethics: Non-malfeasance, Autonomy, Justice and Beneficence.

In closing, it was offered that we focus on the problems that can make a difference, and that, “We should be a society which affords individuals and groups fair treatment and an impartial share of the benefits of society – based on the principles of human rights and equality (of opportunity), and equity (in the distribution of resources).

The session was followed by questions and comments from the conference attendees.

PLENARY PANELS

Session Title:          What is Community Based participatory Research?

Session Presenters:  Eduardo J. Simoes, MD, MSc, MPH, Centers for Disease Prevention                                                                                 and Control

                             Daniel, S Blumenthal, MD, MPH, Morehouse School of Medicine

                             Darrell Sabbs, Community Benefits Coordinator,                                                                            Phoebe Putney Memorial Hospital

Session Summary:

The session reiterated the definition of CBPR and continued discussion of the bioethics in its use. There was general discussion on the differences and conditions of traditional clinical based research and community based research. The differences were stated as follows:

Traditional Clinical Research:

• Therapeutic Focus
• Centered on individual participant (patient)
• Physician scientists
• Participants are patients, receiving care
• Strong motivation to participate

Community Based Research:

• Prevention focus
• Population-centered
• Multidisciplinary approach
• Participants continue their usual activities
• Motivation to participate may be low

The session continued with four levels of CBPR:

1 Persons consulted by the researchers are at the periphery of the community, often working for human service agencies and living outside the community.   Community residents are unaware of the research.

2 The project’s advisors are leaders drawn from organizations and churches within the community, but the researchers retain total control of the project. There is community involvement, but it is passive.

3 Community leaders are asked not only for endorsement of the project, but for guidance in hiring community residents to serve as interviewers, outreach workers, etc. This model is community-based but not community-involved, since community members do not contribute to the design of the research. Offers potential for community manipulation by hiring influential community members.

4 Community members are first among equals in defining the research agenda, identifying the problem to be studied, analyzing its contributory factors, and proposing possible solutions

The session continued with a federal perspective of CBPR using a definition developed and adopted by the Prevention Research Center Network 2007 as a “joint effort that involves researchers and community representatives in all phases of the research process. The joint effort engages community members, employs local knowledge in the understanding of health problems and the design of interventions and invests community members in the processes and products of research. In addition, the researcher and community members form a collaborative invested in the dissemination and use of research findings to improve community health and reduce health disparities.” It is considered vital to making research and its results practical, acceptable, and sustainable.

There was further discussion on the 1984 establishment of Prevention Research Centers Program, a federal initiative for conducting research with underserved communities by using CBPR established by Congress in 1984.

The federal initiative considers CBPR as vital to making research and its results practical, acceptable, and sustainable, CBPR challenges researchers to develop methodology appropriate for the study and the community and requires commitment by all partners (including funders) to learn each other’s culture, language, and needs. This portion of the presentation closed by emphasizing that research involving community partners is, can, and should be rigorous.  The criteria for quality research should not be compromised in CBPR.

The final portion of the presentation focused on Guidelines for Collaboration and Community Advisory Boards (CAB). A Guideline for Collaboration was described as “the collective values of the partners and lays out roles, responsibilities, and strategies for making decisions”.  Specifically, CAB involvement in research planning activities include:

• Soliciting opinions on what we should try to learn
• Selecting participating communities
• Deciding eligibility criteria
• Helping to recruit local community members to participate in research as staff and participants
• Helping train staff by serving as practice participants
• Helping interpret research findings
• Co-authoring publications and presentations

The session was followed by questions and comments from the conference attendees.

                                    What is Fair?

Session Presenters:     Reuben Warren, DDS, PhD, MPH, MDiv, Tuskegee University

        Gladys Ashe Robinson, PhD, Piedmont Health Services and Sickle                                                           Cell Agency

Session Summary:

The sessions reiterated the importance of bioethics, using the Tuskegee Study of Untreated Syphilis, and examples of federal grant procurement strategies considered beneficial to the community based organizations.

BREAK – Lunch

Lunch participants were treated to a presentation and improvisational comedy show conducted by John Galland, PhD, from the DHHS Office of Research integrity and Flow Productions of Chicago Illinois meant to encourage attendees to consider how internal and external factors influence their views of CBPR. The team presented examples of interactions based upon several typical scenarios.

BREAKOUT SESSIONS

The afternoon sessions allowed participants to select from a number of breakout sessions, with topics including: ethical considerations, case studies current program overviews and outcomes in communities, and the uses of CBPR in disease management and prevention. Along with the subject matter experts, each session was facilitated by a moderator who helped form closing questions to be used in an interactive feedback session as part of the conference closing. 

The sessions served as interactive as interactive forum between subject matter experts and conference attendees which allowed participants to choose sessions of personal interest in support of the morning General Session. Complete presentations are available at the end of the summary and are summarized by title only.

Session Title:              REACH: Diabetes an impact in African American Communities in Charleston

Session Type:              Concurrent Breakout Session 1

Session Presenter:      Carolyn Jenkins, DR, PH, APRN-BC, RD, LC FAAN

                                    College of Nursing

                                    Medical University of South Carolina

                                    Florene Linnen, Founder

                                    Georgetown Diabetes Coalition

Session Title:              Ethical Considerations of CBPR: Case Studies

Session Type:              Concurrent Breakout Session 2

Session Presenter:      Vivian Carter, PhD, MHR

                                    Tuskegee Bioethics Center

Session Title:              CBPR Approach to Inhalant Use in Georgia Middle School System

Session Type:              Concurrent Breakout Session 3

Session Presenter:      Ellen Gerstein, MBA

                                    Gwinnet Coalition for Health and Human Services

Session Title:              Emory Prevention Research Center Partnerships in SW Georgia

Session Type:              Concurrent Breakout Panel 1

Session Presenter:      Johanna M Hinman, MPH CHES

                                    Rollins School of Public Health

                                    Emory University

Session Title:              Building Community Coalition toward HIV Prevention among People of Color In Tennessee

Session Type:              Concurrent Breakout Panel 2

Session Presenter:      Charles Williams, PhD

                                    University of Memphis

Glenn A Fleming, MA

Daniel Payne Outreach Ministries

Session Title:              Community Based Nursing and its effects in Mississippi

Session Type:              Concurrent Breakout Panel 3

Session Presenter:      Romeatrius Moss, RN, MN

                                    Mississippi Gulf Coast Black Nurse Association

Charlotte Gore, RN, MN

                                    Mississippi Gulf Coast Black Nurse Association

CLOSING SESSION

The conference ended with a closing interactive feedback session comprised of questions formed by attendees during the afternoon breakout sessions and a participant evaluation of the conference. Closing remarks and thanks to attendees were given by Clara Cobb, Acting Regional Director of Region IV Department of Health and Human Services and Dr. Douglas Greenwell, Chief Executive Officer or the Atlanta Regional Health Forum. The conference adjourned.