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Research and Evaluation
Understanding Community-Based Processes for Research Ethics Review Co-Sponsored by Community-Campus Partnerships for Health (CCPH) & the University of New England (UNE) Background & Significance A number of community groups and community-institutional partnerships have established their own community-based processes for research ethics review that operate independently or in parallel with institution-based IRBs (institutional review boards). With the exception of federally recognized community IRBs such as those operated by tribes and community health centers, community-based processes for research ethics review are not mandated or regulated. Beyond anecdotal reports, little is known about their prevalence, history, processes, experiences and outcomes. A systematic approach to identifying and studying these processes will increase our understanding of the ethical issues that arise in community-based research and yield promising practices and recommendations for ensuring the protection of communities involved in research. Study Aims, Methods & Timeframe Essentially, we are interested in learning more about how community groups and community-institutional partnerships decide what research to support, conduct or participate in - and how this may differ from what institution-based IRBs consider when they review community-based research proposals. Aim 1: Identify and describe community-based processes
for research ethics review Aim 2: Assess the similarities and differences between the protocols
used by community-based processes for research ethics review and those used by
institution-based institutional review boards Aim 3: Describe in-depth the
history, processes, ethical considerations, experiences and outcomes of community-based
processes for research ethics review. Study Products & Outcomes The study will generate new knowledge about community-based research ethics review that identifies promising practices and recommendations for ensuring the protection of communities involved in research. An intended outcome of the study is the formation of an ongoing collaborative research network among community-based processes for research ethics review. We will determine multiple strategies for disseminating our findings and recommendations to primary audiences, which include communities, community-institutional partnerships, IRB members and administrators, and agencies that fund and regulate research. At a minimum, study products will include:
Click on the citation below to open the corresponding presentation or paper: Shore N, Seifer SD, Wong K, Bajorunaite R, Moy L, Cyr K, Baden AC. Understanding Community-Based Processes for Research Ethics Review (powerpoint presentation). . Presented at the Public Responsibility in Medicine and Research's 2008 Advancing Ethical Research Conference, November 16-19, 2008. Shore N, Seifer SD, Bajorunaite R, Wong K, Moy L, Cyr K and Baden AC. Understanding Community-Based Processes for Research Ethics Review (poster presentation). Presented at Public Responsibility in Medicine and Research's 2008 Advancing Ethical Research Conference, November 16-19, 2008. Shore N, Drew E, Brazauskas R, Seifer SD. Understanding the Relationships between Community-Based Processes for Research Ethics Review and Institution-based IRBs (poster presentation). Presented at Public Responsibility in Medicine and Research's 2010 Advancing Ethical Research Conference, December 6-8, 2010. Shore N, Brazauskas R, Drew E, Wong KA, Moy L, Baden AC, Cyr K, Ulevicus J, Seifer SD. Understanding Community-Based Processes for Research Ethics Review: A National Study. Am J Public Health. Published online ahead of print December 16, 2010: e1-e6. doi:10.2105/AJPH.2010.194340 Shore N and Seifer SD. Deciding What Research Takes Place in their
Communities: The Role of Community-Based Research Review. Presented at
Urban Health
Grand Rounds, Mt. Sinai School of Medicine, April 15, 2011. Community IRBs and Research Review Boards: Shaping the Future of Community-Engaged Research. Albert Einstein College of Medicine, The Bronx Health Link and Community-Campus Partnerships for Health, 2012 Study Team The study team as of January 2011 is Sarena D. Seifer at CCPH, Nancy Shore at the University of New England, and Elaine Drew and Ruta Bajorunaite at the Medical College of Wisconsin. Study Advisory Committee These experts in CBPR and research ethics are serving as study advisors:
Supporting Organizations These organizations representing key study stakeholders have written letters of support for the study. We have sought their assistance in reviewing draft study materials, identifying and recruiting survey participants and disseminating study findings.
IRB Review The IRBs at the University of Washington and the University of New England reviewed the study and determined that it did not meet the definition of human subjects research and thus did not require IRB review For More Information Email the study team at ccphirb@u.washington.edu Join CCPH's CBPR & Research Ethics Listserv Visit CCPH's CBPR
& Research Ethics Webpage
Service-Learning
Programs in Health Professions Education: What Contributes to their Sustainability
and what is their Long-Term Impact? Study Purpose As service-learning grows in popularity in health professions education, sustainability is an increasingly relevant concern. To explore the long-term sustainability of service-learning, Community-Campus Partnerships for Health (CCPH) conducted a study of the ten-year outcomes of the Health Professions Schools in Service to the Nation (HPSISN) program. From 1995 to 1998 HPSISN provided three-year grants to 17 health professions schools to support community-academic partnerships for service-learning, and the integration of service-learning into the curriculum. This ten year follow-up study first assessed the sustainability of service-learning among HPSISN schools. It then identified what factors influenced the sustainability of service-learning in this cohort, as challenges, facilitating factors, and strategies for success. Finally, this research explored the long-term impact of service-learning for everyone involved, including students, faculty members, administrators, community agencies, and community members. This
study was completed in August of 2009, and articles are expected to be published
in 2010. Study findings are currently available in the presentations and documents
below. Study Investigators & Advisors This study was conducted by Amanda L. Vogel as her dissertation work for the PhD in Health Policy at the Johns Hopkins Bloomberg School of Public Health. It was conducted with the full endorsement of CCPH, with advising from Sarena Seifer and Sherril Gelmon of CCPH. Study Design This study began with key informant interviews with 16 of the 17 principal investigators (PIs) who led the HPSISN-funded service-learning initiative at each participating school, as well as six of their colleagues who the PIs recommended as participants. Based on findings from these interviews, we conducted in-depth case studies of two of the HPSISN-supported service-learning initiatives that had been successfully sustained. Case studies involved site visits to each school and two of its community partners for service-learning, and interviews with academic administrators, faculty, service-learning staff, students, directors of community agencies, and other staff of community agencies. Data collection also included document analysis for all 16 schools and all participating community agencies. Ethics Review of the Study This study was approved by the Institutional Review Board at the Johns Hopkins Bloomberg School of Public Health. Study Funders Support for the study was provided by the Corporation for National and Community Service and the Agency for Healthcare Research and Quality. Study Findings & Products Click on the citation title to open the corresponding document/slideset: Vogel AL, Seifer SD. (2011) Impacts of Sustained Institutional Participation in Service-Learning: Perspectives from Faculty, Staff and Administrators. Gateways: International Journal of Community Research and Engagement Vol 4: 186-202.Vogel AL, Seifer SD, Gelmon SB. (2011) Key Influences on the Long-Term Sustainability of Service-Learning in Higher Education. NSEE Perspectives. Vogel AL, Seifer SD, Gelmon SB. (2010) What Influences the Long-Term Sustainability of Service-Learning? Lessons from Early Adopters. Michigan Journal of Community Service Learning. 17(1): 59-74. Vogel, AL. Advancing Service-Learning in Health Professions Education: Maximizing Sustainability, Quality and Co-Leadership. A dissertation submitted to Johns Hopkins University in conformity with the requirements for the degree of Doctor of Philosophy, 2009. Vogel, AL. Sustaining service-learning in health professions education: Ten-year results of the HPSISN program. Oral presentation at the meeting of the Health Disparities Service-Learning Collaborative. Philadelphia, PA. November, 2009. Vogel, AL & Seifer SD. Sustaining service-learning and maximizing its benefits: The perspectives of community and academic partners. Oral presentation at the 137th Annual Meeting and Exposition of the American Public Health Association. Philadelphia, PA, November, 2009. Vogel AL and Seifer SD. Evaluating the Long-Term Sustainability and Impact of SL in the Health Professions: A Ten Year Follow-Up Study of the HPSISN Program. Oral Presentation at the Eighth International Research Conference on Service-Learning and Community Engagement. New Orleans, LA, October 25-28, 2008. Vogel, AL, Seifer SD & Gelmon SB. Sustaining service-learning and maximizing its benefits: Lessons from a national demonstration program. Symposium at Community-University Exposition (CUEXPO) 2008. Victoria, BC, Canada, May 2008. Vogel AL. Long-term sustainability of service-learning programs: A ten year follow-up study of the Health Professions Schools in Service to the Nation program. Poster presentation, Johns Hopkins Bloomberg School of Public Health, Department of Health Policy and Management, Research Retreat. February 2008. Vogel AL and Seifer SD. Long-term
sustainability of service-learning programs: A ten year follow-up study of the
Health Professions Schools in Service to the Nation program. Oral presentation,
135th Annual Meeting and Exposition of the American Public Health Association.
Washington, DC, November 2007. For More Information Email Dr. Vogel for more information about the study.
Examining
Community-Institutional Partnerships for Prevention Research Project Description This 4-year project began in fall 2002 with funding from the Prevention Research Center Program Office through a cooperative agreement between the Association of Schools of Public Health and the Centers for Disease Control and Prevention. The project aimed to identify and synthesize what is known about community-academic collaborations in prevention research and develop and evaluate strategies to foster community and institutional capacity for participatory research at national and local levels. The project's ultimate goal was to facilitate approaches for effectively translating community interventions in public health and prevention into widespread practice at the community level. Through community-institutional partnerships for prevention research, new knowledge about the social and ecologic determinants of health will be gained, priority health issues from the community's perspective will be increasingly addressed, and the public's health will be improved. Click here to read a project fact sheet. Project Partners The project involves nine partner organizations that each bring a wealth of relevant information and experience: CDC
Prevention Research Centers National Community Committee Community-Based
Public Health Caucus of the American Public Health Association Community-Campus
Partnerships for Health at the University
of Washington School of Public Health and Community Medicine Community
Health Scholars Program Detroit
Community-Academic Urban Research Center New
York Urban Research Center Seattle
Partners for Healthy Communities Wellesley
Institute Yale-Griffin
Prevention Research Center Project Outcomes and Components The measurable outcome objectives of this collaborative project were to:
Project Updates During the first year of the project (2002-2003), the partner organizations primarily collaborated to examine and synthesize existing data they already had available on community partnerships for prevention research. During the second year of the project (2003-2004), the project partners created two working groups which designed and implemented two specific strategies for building community and institutional capacity for participatory approaches to prevention research:
In the third and fourth years of the project (2004-2006), the project partners disseminated and promoted the project's Curriculum Training Module for Developing and Sustaining Community-Based Participatory Research Partnerships, and continued promoting and disseminating project findings, recommendations and products.
Presentations on the project have been given at the following conferences and venues. To access additional information about these presentations (including powerpoint slides and handouts), visit http://depts.washington.edu/ccph/pastpresentations.html.
Click
here for CCPH's webpage on community-based participatory
research (CBPR), including definitions, tools and resources, and CBPR course syllabi. Project Products The project resulted in a peer-reviewed publication of findings and an online skill-building curriculum, Developing and Sustaining CBPR Partnerships. For Project
Partners Only: Click Here National Evaluation of Service-Learning in Health Professions Education The Health Professions Schools in Service to the Nation Program is a national demonstration program of service-learning in health professions education. In April 1995, twenty health professions schools were awarded three-year grants to integrate service-learning into their core curricula. A two-year external evaluation of the program was conducted by a team at Portland State University. The final evaluation report describes the program, the overall scope and purpose of the evaluation, a summary of findings across the grantees, and observations regarding the potential for service-learning in health professions education. Major findings include:
Community-Campus Partnerships: A National Study of Academic Health Centers and their Surrounding Communities Project Description This multi-site study examines the community involvement of academic health centers (AHCs) in education, research, clinical care, community service and community and economic development. The first phase of the study examines institutional factors (e.g. perception of external forces, leadership, climate, faculty roles and rewards) affecting the development of community-campus partnerships. Data collection methods include written questionnaires and document analysis. The respondents to the study include vice chancellors, CEOs of affiliated health care delivery systems, deans, faculty, and coordinators of community-based activities. The second phase of the study examines AHC-community partnerships from the perspective of the communities that collaborate with the academic institutions. Primary data collection consists of on-site interviews with community participants from community-campus partnerships identified in the survey responses from the first phase of the study. The interviews will focus on the community's perceptions of the structure, processes and outcomes of community-academic partnerships. The study includes both research-oriented and community-based, and public and private academic health centers. Comparisons across these institutions highlight the different factors contributing to the community involvement of these AHCs, and the different challenges these institutions face in becoming more responsive to the overall health of their surrounding communities. A national advisory committee is overseeing the project's design and implementation. Goals
Intended Audience Institutional leaders and health professions school faculty, staff of community-based organizations, and state and federal policy makers Funding Grant support is from the Health Professions Schools in Service to the Nation (HPSISN), a service-learning demonstration program of The Pew Health Professions Commission and the National Fund for Medical Education, sponsored by The Pew Charitable Trusts, the Corporation for National Service Learn and Service America: Higher Education program, and the Health Resources and Services Administration. Community-Campus Partnerships for Health, a nonprofit organization dedicated to fostering health-promoting partnerships between communities and higher education, is supporting the dissemination of the study findings and follow-up activities to the study. Principal Investigators
Click here to view and print a summary of a presentation on the study given at the March 1998 meeting of the Association of Academic Health Centers. You must have Adobe Acrobat Reader (available free of change from Adobe Systems) to view and print this file. Click here to view this abstract based on the study: Forces Affecting Community Involvement of AHCs: Perspectives of Institutional and Faculty Leaders coauthored by Diane Coucoulas Calleson, Sarena D. Seifer, and Cheryl Maurana; Acad Med 2002;77 72-81. Click here to view this paper based on the study: Calleson DC and Seifer SD (2004). Institutional collaboration and competition in community-based education. Journal of Interprofessional Care 18(1): 63-74. Click
here to view this paper based on the
study: Calleson DC, Jordan C and Seifer SD. Community-Engaged Scholarship: Is
Faculty Work in Communities a True Academic Enterprise? Acad Med. 2005 Apr;80(4):317-21. Click here for an abstract and information on ordering the complete dissertation on which this study is based. For More Information For more information on the study, please contact Sarena Seifer. Study findings and reports will be posted on this website as they become available. The Urban Health Initiative Evaluation Project Conducted by Community-Campus Partnerships for Health Sponsored by the Fan Fox and Leslie R. Samuels Foundation Background Community service and community-based learning are prominent themes across the health professions. Leaders within academe have articulated a vision for community service and community-based learning based on partnerships between health professional schools and the communities they serve. These calls to action have largely been due to environmental factors, including changes in financing and delivery of health care; concerns about the size, distribution and quality of the health workforce; and concerns about the erosion of medical professionalism and the clinician-patient relationship. Proponents of community service in medical education advance numerous arguments for the important and unique learning opportunities offered in these settings including new knowledge and skills related to health promotion and disease prevention strategies, patient communication, and health issues of rural and underserved communities just to name a few. Further, such experiences are believed to contribute to a commitment to caring, civic responsibility, and life-long civic engagement. The literature on community service and community-based learning in medical education contains many descriptive reports and several outcome studies about a variety of programs, ranging from those that are student-initiated and led community service to those that are fully integrated into the core medical school curriculum (service-learning). Community-Campus Partnerships for Health (CCPH) has received a grant from the Fan Fox and Leslie R. Samuels Foundation provides to conduct a process evaluation of the Urban Health Initiative (UHI), a medical student community service initiative based in New York. This evaluation provides an opportunity to contribute to the growing body of literature and knowledge on medical student community service and medical education. Overview of the Urban Health Initiative Since 1993, the Fan Fox and Leslie R. Samuels Foundation has provided grant funding to the New York Academy of Medicine (NYAM) to increase involvement of New York medical schools and medical students in community service. The goals of the UHI are:
The UHI provides student opportunities, primarily in their first and second years of medical school, to learn about community based health care programs in order to foster better understanding of medicine and community, and provide relevant community service in New York. Click here to view and print an article on the UHI: "Community Service as an Integral Component of Undergraduate Medical Education: Facilitating Student Involvemen", authored by Holly Michaels Fisher, in the Summer 1995 issue of the Bulletin of the New York Academy of Medicine. You must have Adobe Acrobat Reader (available free of change from Adobe Systems) to view and print this file. Overview of evaluation plan conducted by Community-Campus Partnerships for Health Community-Campus Partnerships for Health has been awarded a grant from the Fan Fox and Leslie R. Samuels Foundation to conduct a process evaluation of the UHI with guidance from a project advisory committee. The purpose of the year-long evaluation, begun June 1, 2001, is to examine and document the current and historical implementation of the UHI by the NYAM and within the participating medical schools and community agencies. The findings from the process evaluation will contribute to the design of an outcome evaluation to be implemented in a subsequent phase of the project. Among the questions and issues to be addressed in the evaluation are:
The data collection will include a variety of qualitative and quantitative methods including on-site focus groups, in-person and telephone interviews, and written surveys. A final report of findings and recommendations is due to the Foundation in spring 2002. Edited versions of the report will be submitted for publication to peer-reviewed journals and disseminated in other ways. Project Team The project team at Community-Campus Partnerships for Health includes executive director Sarena D. Seifer, senior consultant Kara Connors (CCPH's former associate director), graduate research assistant Tanis Mihalynuk and executive assistant Rose Coroneos. Additional individuals will assist with on-site data collection, including several members of the project advisory committee, below (Mick Huppert and Judy Lewis). To obtain more information about the evaluation of the UHI, please email Sarena Seifer. Project Advisory Committee members
Conducted by Community-Campus
Partnerships for Health Sponsored by the National Institutes of Health, Office of Behavioral and Social Sciences Research Background In recent years, national organizations, funding agencies and researchers have called for a renewed focus on an approach to health research that recognizes the importance of social, political and economic systems to health behaviors and outcomes. As a result, research that involves partnerships between communities and universities have become central to the national prevention research agenda. Although there is a growing literature about community-university partnerships for research, questions remain about the infrastructure required to develop and sustain these partnerships. For example, what community structures, processes and policies are required to conduct community-based participatory research? What university structures, processes and policies are required? What faculty, staff and volunteer roles, expertise and experience are required?
The NIH Office of Behavioral and Social Sciences Research commissioned Community-Campus Partnerships for Health to draft a report on the infrastructure required to develop and sustain community-university partnerships for health research. Published in January 2003, the paper identifies nine critical issues that affect the infrastructure required for community-university research partnerships and, consequently, the future of the field. Attention to these issues is critical in order to provide the necessary support for both academic and community partners. Click here for a copy of the final paper.
Click here
for more resources on community-based participatory research. Project Team The CCPH project team included executive director and research assistant professor Sarena D. Seifer, doctoral student Nancy Shore, program coordinator Stacy L. Holmes, and executive assistant Rose Coroneos. For more information about this project, please email Sarena D. Seifer or call 206/616-4305. A Case Study of a Successful Community-Campus Partnership: Changing the Environment Through Collaboration Project Description Collaborative initiatives between higher education institutions and the communities that surround them reflect a shared interest. Collaborative partnerships between the town and gown have historically been formed to enhance business ventures, share physical resources, and confront community challenges (Mattesich & Monsey, 1992, Taylor-Powell, Rossing, & Geran, 1998). This study, conducted in 2001-2002 by CCPH member Julie Bell-Elkins and supported in part by a small grant from CCPH, focused on community-campus collaborations addressing a specific challenge: underage drinking and irresponsible behavior while under the influence of alcohol (IBUI, Bell-Elkins 2002). This qualitative research study was designed to examine the components that created a successful collaboration and to identify what factors enable the partnership to sustain itself over time. The findings from this study could be helpful to community-campus partnerships (CCPs) that are formed to meet a variety of goals beyond the issues of underage drinking and IBUI. The goal of this case study was to learn about the structures, resources, and processes that have formed and sustained one successful CCP. Bell-Elkins broke new ground by being the first to apply the group development framework, Structuration Theory, and the Nine Principles of Good Practice for Community-Campus Partnerships developed by Community-Campus Partnerships for Health to a partnership formed to reduce underage drinking and IBUI. Fostering formal CCPs in the form of a committee is relatively new; therefore the research in this area is limited. The articles and research projects on the topic of CCPs often focus on quantitative approaches that document reductions in specific behaviors such as fewer arrests, less noise, less damage, and fewer community complaints regarding alcohol-related behavior of college students (Alcohol Issues & Solutions, 1999, Boedhman, 1999, Gebhardt, Kaphingst, & DeJong, 2000). The partnership in this study was formed to reduce underage drinking and IBUI; however, Bell-Elkins argued that many of the findings in this study will provide practical applications for community-campus partnerships with other missions. The significance of this study is three-fold. First, this study has contributed to the field by increasing the depth of information about CCPs by studying one successful partnership using qualitative techniques. The case study included interviews of members of the partnership and enlisted their perspectives to identify conditions and factors that support the success of their community-campus partnership. Second, by studying a successful partnership, as identified by leaders in the field of higher education alcohol prevention, information regarding successful practices can emerge and be utilized by other partnerships working to sustain current efforts. Finally, Bell-Elkins applied a set of principles of good practices utilized by the national organization for Community-Campus Partnerships for Health, which allowed comparison to the actual practices of the partnership in the study. In addition to comparing the actual practices to the set of principles, the study allowed new principles to emerge. The conceptual frameworks for this study were chosen based on their applicability to the four guiding questions. Structuration Theory, grounded in the field of Speech Communication, provides a set of principles that pay particular attention to the process, resources, and evolution of groups (Giddens, 1984). The four guiding questions explored the formation, evolution, success, and sustainability of the partnership.
Bell-Elkins was particularly interested in identifying the institutional and social practices of the CCP, the College, and tavern owners in the study. She used a second framework, CCPH's Nine Principles of Good Practice to analyze the data gathered in the study. Study Products and Outcomes Click here for an abstract of the study and information on ordering the complete dissertation. Click here for the assessment tool used to assess CCPH principles of partnership. Click here for a set of study citations and references. Click here for an overview of the study findings, reported at the 2002 Annual National Meeting on Alcohol and Other Drug Abuse and Violence Prevention in Higher Education For More Information For more information about the study, please email Julie Bell-Elkins.
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