CBPR WORKSHOP

2010 Community-Based Participatory Research Workshop

"Reducing Barriers between Researchers & Communities"

Thursday, April 8 and Friday, April 9 ▪ University of Houston

The 3rd Annual JERHRE Workshop is scheduled for October 25- 28, 2011. Read Details and Register to Attend.

Downloads

Workshop papers, presentations, and summaries of panel discussions will be available for downloading from this page.

Current CBPR Funding Opportunities from the National Institutes of Health (NIH), Office of Behavioral and Social Sciences Research (OBSSR) (Dana Sampson, National Institutes of Health)

The Many Approaches to CBPR: Learning from the Differences (Linda Silka, Margaret Chase Smith Policy Center, University of Maine)

Guidance Document on "Communicating Disaster Preparedness With Linguistically Isolated Populations." Community Health Statistics, Office of Surveillance and Public Health Preparedness, Houston Department of Health and Human Services. (Workshop presenters: Vishnu Nepal and Deborah Banerjee). This document has been developed primarily for Preparedness Planners, Health Educators, Emergency Response and Community Based Organizations.

Using VISTAs for Sustainable CBPR Initiatives  (Karen Hahn, Center for Faith and Health Initiative).

Human Subjects Protections in Community-Engaged Research: A Research Ethics Framework (Lainie Ross et al). Abstract: In the 30 years since the Belmont Report, the role of the community in research has evolved and has taken on greater moral significance. Today, more and more translational research is being performed with the active engagement of individuals and communities rather than merely upon them. This engagement requires a critical examination of the range of risks that may arise when communities become partners in research. In attempting to provide such an examination, one must distinguish between established communities (groups that have their own organizational structure and leadership and exist regardless of the research) and unstructured groups (groups that may exist because of a shared trait but do not have defined leadership or internal cohesiveness). In order to participate in research as a community, unstructured groups must develop structure either by external means (by partnering with a Community-Based Organization) or by internal means (by empowering the group to organize and establish structure and leadership). When groups participate in research, one must consider risks to well-being due to process and outcomes. These risks may occur to the individual qua individual, but there are also risks that occur to the individual qua member of a group and also risks that occur to the group qua group. There are also risks to agency, both to the individual and the group. A 3-by-3 grid including 3 categories of risks (risks to well-being secondary to process, risks to well-being secondary to outcome and risks to agency) must be evaluated against the 3 distinct agents: individuals as individual participants, individuals as members of a group (both as participants and as nonparticipants) and to communities as a whole. This new framework for exploring the risks in community-engaged research can help academic researchers and community partners ensure the mutual respect that community-engaged research requires.

Nine Key Functions for a Human Subjects Protections Program for Community-Engaged Research: Points to Consider (Lainie Ross et al). Abstract: The ethical conduct of community-engaged research (CEnR), of which the Community-Based Participatory Research (CBPR) model is the partnership model most widely discussed in the CEnR literature and is the primary model we draw upon in this discussion, requires an integrated and comprehensive human subjects protection (HSP) program that addresses the additional concerns salient to CEnR where members of a community are both research partners and participants. As delineated in the federal regulations, the backbone of a HSP program is the fulfillment of nine functions: (1) minimize risks; (2) reasonable benefit-risk ratio; (3) fair subject selection; (4) adequate monitoring; (5) informed consent; (6) privacy and confidentiality; (7) conflicts of interest; (8) address vulnerabilities; and (9) HSP training. The federal regulations, however, do not consider the risks and harms that may occur to groups, and these risks have not traditionally been included in the benefit: risk analysis nor have they been incorporated into an HSP framework. We explore additional HSP issues raised by CEnR within these nine ethical functions. Various entities exist that can provide HSP—the investigator, the Institutional Review Board, the Conflict of Interest Committee, the Research Ethics Consultation program, the Research Subject Advocacy program, the Data and Safety Monitoring Plan, and the Community Advisory Board. Protection is best achieved if these entities are coordinated to ensure that no gaps exist, to minimize unnecessary redundancy, and to provide checks and balances between the different entities of HSP and the nine functions that they must realize. The document is structured to provide a “points-to-consider” roadmap for HSP entities to help them adequately address the nine key functions necessary to provide adequate protection of individuals and communities in CEnR.

The Challenges of Collaboration for Academic and Community Partners In a Research Partnership: Points to Consider (Lainie Ross et al). Abstract: The philosophical underpinning of Community-Engaged Research (CEnR) entails a collaborative partnership between academic researchers and the community. The Community-Based Participatory Research (CBPR) model is the partnership model most widely discussed in the CEnR literature and is the primary model we draw upon in this discussion of the collaboration between academic researchers and the community. In CPBR, the goal is for community partners to have equal authority and responsibility with theacademic research team, and that the partners engage in respectful negotiation both before the research begins and throughout the research process to ensure that the concerns, interests, and needs of each party are addressed. The negotiation of a fair, successful, and enduring partnership requires transparency and understanding of the different assets, skills and expertise that each party brings to the project. Delineating the expectations of both parties and documenting the terms of agreement in a memorandum of understanding or similar document may be very useful. This document is structured to provide a “points- to-consider” roadmap for academic and community research partners to establish and maintain a research partnership at each stage of the research process.

360 Degrees of Human Subjects Protections (HSP) in Community Engagement Research (CEnR) (Lainie F. Ross, University of Chicago. VideoLAN VLC media player required to play flv file. Download player or view PowerPoint slides).

The Challenges of Collaboration for Academic and Community Partners in a Research Partnership: Points to Consider (Lainie F. Ross, University of Chicago. VideoLAN VLC media player required to play flv file. Download player or view PowerPoint slides).

Geospatial Technology Applications in Service Learning and Community-Based Participatory Research (David Padgett, Tennessee State University) (PDF version).

Preface: Advancing Environmental Justice through Community-Based Participatory Research (Shepard, Northridge, Prakash, & Stover).

Delineating Urban Food Deserts and Associated Health Impacts (David Padgett, Tennessee State University and Heather O'Hara, Meharry Medical College).

Healthy Food Void May Feed Obesity/Study Suggests Obesity Link (The Tennessean, 4/3/10, David Padgett quoted).

Geospatial Technology Applications in Service Learning and Community-Based Participatory Research (David Padgett, Tennessee State University).

Community-Based Asset Mapping for Youth Violence Prevention (David Padgett et al).

Clinical and Translational Science Awards (CTSA) (Andrea Sawczuk, National Center for Research Resources)

Disparate Views of Community in Primary Health Care: Understanding How Perceptions Influence Success (Jerome Crowder, UT at Houston and Coral Wayland, University of North Carolina, Charlotte). Abstract: The importance of community in primary health care (PHC) is evident in the role of community participation and in the types of programs that are routinely implemented (community health-worker [CHW] programs, community clinics, community-based disease-control programs). Few health care providers and program administrators, however, have considered the meaning of community. Instead, they frequently impose their own definition of community and assume that it corresponds to local realities. This is problematic because target populations may have different ideas about what a community is and how it functions. When disparate ideas of community exist, they can affect the implementation of PHC programs, leading to low rates of acceptance, participation, and utilization. Using two examples, a community clinic in El Alto, Bolivia, and a CHW program in Rio Branco, Brazil, this article discusses some of the problems that arise when local definitions of community do not correspond to programmatic definitions.

Wireless Networking In An Underserved Neighborhood: Ethnographic Methods for Understanding Technology and Culture (Jerome Crowder, Jessica Wilson, and Esperanza Vredenburg). Abstract: In the spring of 2006, a Houston medical researcher solicited our help in understanding how residents living in Pecan Park, an East Houston neighborhood, seek health care, perceive their neighborhood, and use technology. An ethnographic perspective was needed for the development of an hand-held electronic heart monitoring device (similar to a Sony PSP) that would enable patients to better manage their health1. We would identify the people, places and things that residents trust and where they go for local health care and support. The medical team would then coordinate with a Community Health Worker (CHW) program to provide local support to users of the device, or train particular residents to become CHWs.

Online Communities: Examples of Research Engagement (Emily Anderson, Institute for Health Policy & Research, University of Illinois at Chicago).

CBPR Links

The Journal of Empirical Research on Human Research Ethics (JERHRE) publishes empirical research and reviews of empirical literature on human research ethics. Empirical knowledge translates ethical principles into procedures appropriate to specific cultures, contexts, and research topics. JERHRE is the only journal in the field of human research ethics dedicated exclusively to empirical research. Its distinguished editorial and advisory board brings a range of expertise and international perspective to provide high-quality peer-reviewed original articles. Institutions and their researchers share concern about the responsible conduct of research (RCR), but can experience difficulty finding common ground around the interpretation of ethical principles and regulations. JERHRE seeks to create collaboration among these stakeholders by stimulating research and disseminating knowledge to foster the intelligent application of ethical principles in research contexts worldwide. The basic aim of JERHRE is to improve ethical problem solving in human research. Stakeholders in human research grapple with conflict among various standards. Without evidence-based problem solving, many conflicts are unsatisfactorily settled by applying one-size-fits-all interpretation of principles or regulations, or resorting to anecdote as evidence for one or another interpretation. JERHRE creates collaboration among stakeholders, stimulates research, and disseminates knowledge to foster intelligent application of ethical principles in research contexts worldwide. JERHRE is published by University of California Press. http://www.ucpressjournals.com and abstracted in MEDLINE.

Genetic Alliance is the world's leading nonprofit health advocacy organization committed to transforming health through genetics and promoting an environment of openness centered on the health of individuals, families, and communities. Genetic Alliance’s network includes more than 1,000 disease-specific advocacy organizations as well as thousands of universities, private companies, government agencies, and public policy organizations. The network is a dynamic and growing open space for shared resources, creative tools, and innovative programs. Over the past 24 years, Genetic Alliance has been the voice of advocacy in genetics. Advocacy in the 21st century, however, requires new definitions and new focus. We dissolve boundaries to foster dialogue that includes the perspectives of all stakeholders: from industry professionals, researchers, healthcare providers, and public policy leaders to individuals, families, and communities. In a rapidly changing world, Genetic Alliance understands that nothing short of the transformation of our mission, our goals, even our Board of Directors will suffice to transform health. Download a flyer about Genetic Alliance. Download a list of Genetic Alliance Resources.

NCRR Fact Sheet / Clinical and Translational Science Awards: A national consortium of medical research institutions, funded through the Clinical and Translational Science Awards (CTSAs), shares a common vision to reduce the time it takes for laboratory discoveries to become treat-ments for patients, to engage communities in clinical research efforts, and to train a new generation of clinical and translational researchers.

Selected Geospatial Technology Online Sites for Public Health/Environmental Justice Research (David Padgett)

Developing and Sustaining CBPR Partnerships: As interest in community-based participatory research (CBPR) grows, there is a growing need and demand for educational resources that help build the knowledge and skills needed to develop and sustain effective CBPR partnerships. This evidence-based curriculum is intended as a tool for community-institutional partnerships that are using or planning to use a CBPR approach to improving health. It can be used by partnerships that are just forming as well as mature partnerships.

CES4Health.info: online mechanism for peer-reviewed publication and dissemination of diverse products of CBPR

Resources for CBPR: Resources to Advance Community-Based Participatory Research.

Community-Campus Partnerships for Health Brochure: Building Healthier Communities, Strengthening Higher Education.

Center for Family, Work and Community: The Center for Family, Work and Community is dedicated to providing exceptional organizational development, consultation and training.

Clinical and Translational Science Awards (CTSAs): Drawing from experience of the NIH Roadmap for Medical Research and extensive community input, the Clinical and Translational Science Awards (CTSAs) program creates a definable academic home for clinical and translational research. CTSA institutions work to transform the local, regional, and national environment to increase the efficiency and speed of clinical and translational research across the country.

The Office of Research Integrity (ORI) promotes integrity in biomedical and behavioral research supported by the U.S. Public Health Service (PHS) at about 4,000 institutions worldwide. ORI monitors institutional investigations of research misconduct and facilitates the responsible conduct of research (RCR) through educational, preventive, and regulatory activities.

National Center for Research Resources: An information portal of NCRR, a component of the National Institutes of Health, supporting primary research to create and develop critical resources.

Health-Related Online Communities (List compiled by Emily Anderson, Institute for Health Policy & Research, University of Illinois at Chicago).

Supporting Faculty who do CBPR

Resources for Community-Engaged Scholarship

Toolkit for Making the Best Case for Promotion and Tenure: The goal of this toolkit is to provide health professional faculty with a set of tools to carefully plan and document their community-engaged scholarship and produce strong portfolios for promotion and tenure.

Online Database of Faculty Mentors & Portfolio Reviewers: The Community-Campus Partnerships for Health Online Database of Faculty Mentors and Portfolio Reviewers is a resource for community-engaged faculty who are searching for faculty mentors, and a resource for deans, department chairs and others who are searching for external experts to review portfolios of community-engaged faculty who are being considered for promotion and/or tenure.

Community-Engaged Scholarship Review, Promotion and Tenure Package: The Community-Engaged Scholarship Review, Promotion & Tenure Package has been developed as a resource and guide for community-engaged scholars and university Review, Promotion and Tenure (RPT) committees. Scholars will find this package to be most helpful when preparing their dossier for RPT. RPT committees can review the package to gain a greater understanding of how the scholarly rigor and impact of community-engaged scholarship (CES) can be documented for RPT. The package can also inform revisions of established RPT criteria to incorporate CES. Lastly, it is hoped that the package will play a role in establishing a common language and understanding of the definition, scholarly rigor, and applied impact of CES between scholars and RPT committees.

CBPR Ethics

Report on Ensuring Community-Level Research Protections: Proceedings of the 2007 Educational Conference Call Series on Institutional Review Boards and Ethical Issues in Research.

Advancing the Ethics of CBPR: Abstract: Increasingly communities are engaging in community-based participatory research (CBPR) to address their pressing health concerns, frequently in partnership with institutions. CBPR with its underlying values challenges us to expand the traditional framework of ethical analysis to include community-level and partnership-oriented considerations. This special issue considers ethical considerations inherent in CBPR, presents examples of how communities have created their own processes for research ethics review, and identifies challenges CBPR teams may encounter with institution-based research ethics committees. Drawing upon the special issue articles and the work conducted by Community-Campus Partnerships for Health and the Tuskegee University National Center for Bioethics in Research and Health Care, we propose an approach and a set of strategies to create a system of research ethics review that more fully accounts for individual and community-level considerations.

Community Perspectives on CBPR

Achieving the Promise of Authentic Community-Higher Education. Partnerships: Community Case Stories: Partnerships between communities and higher educational institutions as a strategy for social change are gaining recognition and momentum. Despite being formed with the best of intentions, however, authentic partnerships are very difficult to achieve. While academic partners have extensively documented their experiences and lessons learned, the voices of community partners are largely missing. This compilation of community-authored case stories of community-higher education partnerships is one attempt to redress this imbalance while also providing a resource to inform and strengthen these partnerships.

Achieving the Promise of Authentic Community-Higher Education. Partnerships: Community Partners Speak Out: Twenty-three experienced community partners from across the country convened for the Community Partner Summit held April 24-26, 2006. The overall purpose of the Summit was to advance authentic community-higher education partnerships by mobilizing a network of experienced community partners. This report summarizes the dialogue that occurred at the Summit.

Community-Higher Education Partnerships: Community Perspectives Annotated Bibliography: A resource to anyone who is interested or involved in community-higher education partnerships. Compiled by Chris Hanssmann, Jessica Grignon, and Community-Campus Partnerships for Health.

Why Faculty Promotion and Tenure Matters to Community Partners: Abstract: Communities across our nation—whether geographic, ethnic, or issue-based in their composition—are struggling to be healthy, to grow, and thrive. The production of knowledge and the sharing of knowledge by both the community and the higher education institution is the key to helping our communities to improve. Retaining and valuing community-engaged faculty who can both represent the academy to the community and bring the community into the academy are essential to helping secure our vision of the common good. In this paper, three community partners, experienced with and engaged in partnerships between universities and communities with varying challenges of success and failure, examine the specific challenge of review, promotion, and tenure for community-engaged faculty.

CBPR Educational Opportunities

Flyer for CCPH Conference, May 12-15, 2010 in Portland: Community-Campus Partnerships for Health is convening our 11th conference to nurture a growing network of community-campus partnerships that are striving to solve our most pressing health, social and economic challenges.

Other Links

Quest for Research Excellence 2010 Conference, Washington, DC.: To enhance your role in the research enterprise.

The Community Cloth: a microenterprise empowering refugee women in Houston. About the Women of the Community Cloth. Album of the Women of the Cloth.

Download a flyer about the 2010 Workshop to share with colleagues.

Read the UH press release about the workshop.