Community-Engaged Research Articles, Reports, and Books
Articles
Berwick, D.M. (2003) Disseminating Innovations in Health Care. Journal of American Medical Association, 289(15): 1969-1975. PubMed
This article examines the theory and research on the dissemination of innovations and suggests applications of that theory to health care. After identifying three clusters of influence on dissemination, the author makes recommendations for health care executives who want to accelerate the rate of diffusion of innovations within their organizations.
Bowen DJ, Kreuter M, Spring B, Cofta-Woerpel L, Linnan L, Weiner D, Bakken S, Kaplan CP, Squiers L, Fabrizio C, and Fernandez M. (2009) How We Design Feasibility Studies. American Journal of Preventive Medicine, 36(5): 452-457. PubMed
Public health is moving toward the goal of implementing evidence-based interventions. To accomplish this, there is a need to select, adapt, and evaluate intervention studies. Such selection relies, in part, on making judgments about the feasibility of possible interventions and determining whether comprehensive and multilevel evaluations are justified. There exist few published standards and guides to aid these judgments. This article describes the diverse types of feasibility studies conducted in the field of cancer prevention, using a group of recently funded grants from the National Cancer Institute. The grants were submitted in response to a request for applications proposing research to identify feasible interventions for increasing the utilization of the Cancer Information Service among underserved populations.
Cargo, M. & Mercer, S.L. (2008) The Value and Challenges of Participatory Research: Strengthening Its Practice. Annual Review of Public Health, 29: 325-350. Pubmed
The increasing use of participatory research (PR) approaches to address pressing public health issues reflects PR's potential for bridging gaps between research and practice, addressing social and environmental justice and enabling people to gain control over determinants of their health. This review article develops an integrative practice framework that features five essential domains and provides a structured process for developing and maintaining PR partnerships, designing and implementing PR efforts, and evaluating the intermediate and long-term outcomes of descriptive, etiological, and intervention PR studies. This article also identifies the challenges and value of PR.
Cashman S.B., Adeky S., Allen A.J. 3rd, Corburn J., Israel B.A., Montaño J., Rafelito A., Rhodes S.D., Swanston S., Wallerstein N., Eng E. (2008) The Power and the Promise: Working With Communities to Analyze Data, Interpret Findings, and Get to Outcomes. American Journal of Public Health 98(8), 1407-1417. PubMed
Although the intent of community-based participatory research (CBPR) is to investigate community voices in all phases of a research initiative, community partners appear less frequently engaged in data analysis and interpretation than in other research phases. Using four brief case studies, each with a different data collection methodology, this article provides examples of how community members participated in data analysis, interpretation, or both, thereby strengthening community capacity and providing unique insight.
Cohen, D.J., Crabtree, B.F., Etz, R.S., Balasubramanian, B.A., Donahue, K.E., Leviton, L.C., Clark, E.C., Isaacson, N.F., Stange, K.C., and Green, L.W. (2008) Fidelity versus flexibility: translating evidence-based research into practice. American Journal of Preventive Medicine, 35(5 Suppl): 381-389. Pubmed
Understanding the process by which research is translated into practice is limited. The authors of this paper conducted a real-time and cross-case comparison to examine how ten interventions designed to improve health promotion in primary care practices in practice-based research networks change during implementation. The authors found that all interventions required changes as they were integrated into practice. The authors also identify three broad categories of change that occur during the translation process.
Corbie-Smith, G., Moody-Ayers, S., & Thrasher, A.D. (2004) Closing the Circle Between Minority Inclusion in Research and Health Disparities. Archives of Internal Medicine, 164(13): 1362-1364. Pubmed
This article explores strategies to increase minority participation in clinical research while at the same time reducing health disparities between populations by focusing on methodological considerations and the way research is conducted in minority populations.
Dewalt, D.A., Davis, T.C., Wallace, A.S., Seligman, H.K., Bryant-Shilliday, B., Arnold, C.L., Freburger, J. and Schillinger, D. (2009) Goal Setting in Diabetes Self-Management: Taking the Baby Steps to Success. Patient Education and Counseling, [Epub ahead of print]. Pubmed
This paper assessed the usefulness of a diabetes self-management guide and a brief counseling intervention in helping patients set and achieve their behavioral goals. English and Spanish speaking diabetic patients had one in-person session and two telephone follow-up calls with a non-clinical provider over a 12-16 week period. They found that a brief goal setting intervention along with a diabetes self-management guide helped patients set and achieve lifestyle behavioral goals. This study has further implications in that non-clinical providers can successfully help a diverse range of patients with diabetes set and achieve behavioral goals.
Dougherty, D. & Conway, P.H. (2008) The "3T's" road map to transform US health care: the "how" of high-quality care. The Journal of the American Medical Association, 299(19):231-2321. Pubmed
This article proposes a model to transform the United States health care system with intent to accelerate the pace at which interventions are implemented in clinical settings by addressing the "how" of health care delivery. This paper goes on to explain the translational science model, using the three T's (T1,T2, and T3).
Fielden, S.J., Rusch, M.L., Masinda, M.T., Sands, J., Frankish, J. & Evoy, B. (2007) Key considerations for logic model development in research partnership: A Canadian case study. Evaluation and Program Planning, 30: 115-124. Pubmed
This paper explores the learning process of academic and community members who worked together in developing a logic model for a research program focusing on partnerships with vulnerable populations. The authors, coming from both academia and community agencies, present a logic model meant to facilitate program management. Key considerations in the model's development are discussed in the context of an ongoing research partnership; namely, the complexity of the research partnership, power and accountability, alignment with health promotion policy, and the iterative nature of program design.
Flicker, Sarah, Wilson, Michael, Travers, Robb, Bereket, Tarik, McKay, Colleen, van der Meulen, Anna, Guta, Adrian, Cleverly, Shelley & Rourke, Sean B. (2009) Community-based research in AIDS-service organizations: what helps and what doesn't? AIDS Care, 21 (1): 94-102. View online
Through surveys and interviews, this paper explores the barriers and facilitating factors for AIDS-service organizations engagement in community-based research.
Frank, Cyril and Nason, Edward. (2009) Health research: measuring the social, health and economic benefits. Canadian Medical Association Journal, 180(5): 528-534. Pubmed
Despite intense interest in defining the social, health and economic impacts of health research investments globally and in Canada as proof of value-for-money, no validated method for measuring return on investments yet exists. Until now, issues of complexity combined with major gaps in methodology have limited the ability to link health research products to outcomes at a relevant level (e.g., to be useful to stakeholders: individual funders, decision-makers, institutions, researchers or clinicians). This article discusses current approaches to measuring returns on investment, analyzes key issues and gaps that need to be bridged to improve returns on investment, and presents a new method that may help overcome them.
Fullilove, M.T., Green, L.L., Hernandez-Cordero, L.J. & Fullilove, R.E. (2006) Obvious and Not-So-Obvious Strategies to Disseminate Research. Health Promotion Practice, 7(3): 306-311. Pubmed
The findings of health disparities research will have to be disseminated to a broad public in order to influence health outcomes. Some strategies for dissemination are obvious, and these generally work for ideas that are within the mainstream of current paradigms. However, ideas that challenge existing theories and assumptions may require different, and not-so-obvious, strategies. This article discusses the use of movies and site visits as two novel strategies for research dissemination.
Green, L. and Glasgow, R. (2006) Evaluating the Relevance, Generalization, and Applicability of Research: Issues in External Validation and Translation Methodology. Evaluation and the Health Professions, 29(1), 126-153. PubMed
This paper offers questions and guides that can be utilized by practitioners, program planners and policy makers to determine the applicability of evidence to situations and populations other than those in the study. It suggests criteria that can be used to evaluate the potential for generalization and recommends procedures that can be used to adapt evidence based interventions and integrate them into a locally appropriate program
Green, L.W., Ottoson, J.M., Garcia, C. & Hiatt, R.A. (2008) Diffusion Theory, and Knowledge Dissemination, Utilization, and Integration in Public Health. Annual Review of Public Health, 30: 151-174. Pubmed
This article compares diffusion theory (which inspired much of public health's work on dissemination), dissemination, and implementation with related notions that have served other fields in bridging science and practice. This article suggests ways to blend diffusion with other theory and evidence in guiding a more decentralized approach to dissemination and implementation in public health, including changes in the ways we produce the science itself.
Green, L.W. (2008) Making research relevant: If it's an evidence-based practice, where's the practice-based evidence? Journal of Family Medicine, 25(suppl 1): 20-24. PubMed
The usual search for explanations and solutions for the research-practice gap tends to analyze ways to communicate evidence-based practice guidelines to practitioners more efficiently and effectively from the end of a scientific pipeline. This examination of the pipeline looks upstream for ways in which the research itself is rendered increasingly irrelevant to the circumstances of practice by the process of vetting the research before it can qualify for inclusion in systematic reviews and the practice guidelines derived from them. It suggests a "fallacy of the pipeline" implicit in one-way conceptualizations of translation, dissemination and delivery of research to practitioners. Secondly, it identifies a 'fallacy of the empty vessel' implicit in the assumptions underlying common characterizations of the practitioner as a recipient of evidence-based guidelines. Remedies are proposed that put emphasis on participatory approaches and more practice-based production of the research and more attention to external validity in the peer review, funding, publication and systematic reviews of research in producing evidence-based guidelines.
Guydish, J., Tajima, B., Manser, S., & Jessup, M. (2007). Strategies to Encourage Adoption in Multisite Clinical Trials. Journal of Substance Abuse Treatment, 32, 177-188. PubMed
Through an analysis of the National Institute on Drug Abuse Clinical Trials Network's multisite study, this paper identifies strategies that could be applied in the planning, development and implementation of multisite studies to better support the adoption of tested interventions in study clinics after trails have ended.
Harrison, J.D., Masya, L., Butow, P., Solomon, M., Young, J., Salkeld, G. and Whelan, T. 2009. Implementing patient decision support tools: moving beyond academia? Family Medicine, 41(7):508-12. PubMed
Twenty colorectal surgeons participated in a focus group or individual interviews to ascertain the feasibility of implementing three decision support tools (DSTs) for people with rectal cancer within the surgical consultation. Colorectal surgeons were also asked to complete a self-administered questionnaire. This study found all surgeons responded encouragingly to the concept of DSTs. However, for every positive statement an accompanying caveat was made and these were either a criticism of each tool or a barrier to their implementation into routine clinical practice. The authors suggest feasibility and implementation studies have the potential to provide important information to help guide development, evaluation and implementation of DSTs.
Jones, L. & Wells, K. (2007) Strategies for Academic and Clinician Engagement in Community-Participatory Partnered Research. The Journal of the American Medical Association, 297(4):407-410. Pubmed
This article aims to familiarize clinical investigators with the principles of Community Partnered Participatory Research (CPPR) and offers strategies to establish effective research partnerships between researchers and the communities. A set of guidelines and implementation stages for CPPR are presented in the article.
Kegeles, S.M., Rebchook, G.M. & Tebetts, S. (2005) Challenges and Facilitators to Building Program Evaluation Capacity Among Community-Based Organizations. AIDS Education and Prevention, 17(4): 284-299. Pubmed
This article summarizes a qualitative study of 21 Community-Based Organizations (CBOs), 12 funders, and 11 technical assistance providers regarding their beliefs and attitudes about evaluation, preferences and requirements for evaluation, evaluation methods that are currently being used at CBOs, and recommendations regarding feasible and effective evaluation. This article provides a model for evaluation recommendations, tools, training, and technical assistance to help CBOs increase their capacity to evaluate and implement evidence-based HIV prevention intervention.
Kerner, J., Rimer, B., & Emmons, K. (2005) Introduction to the Special Section on Dissemination: Dissemination Research and Research Dissemination: How Can We Close the Gap? Health Psychology, 24(5): 443-446. Pubmed
One of the greatest challenges facing health promotion and disease prevention is translating research findings into evidence-based public health and clinical practices that are actively disseminated and widely adopted. Despite the tremendous strides made in developing effective disease prevention and control programs, there has been little study of effective dissemination of evidence-based programs to and adoption by community, public health, and clinical practice settings. This article highlights exemplary dissemination research efforts while also identifying research limitations and framing important future research questions, specifically for researchers interested in health psychology dissemination research.
Kottke, T.E., Solberg, L., Nelson, A., Belcher, D.W., Caplan, W., Green, L.W., Lydick, E., Magid, D.J., Rolnick, S.J. and Woolf, S.H. (2008) Optimizing practice through research: a new perspective to solve an old problem. Annals of Family Medicine, 6(5):459-462. Pubmed
Policy makers, researchers, clinicians, and the public are frustrated that research in the health sciences has not resulted in a greater improvement in patient outcomes. The authors of this article suggest that this frustration could be reduced if the task of health sciences research was reframed, using the term optimizing practice through research. The authors provide five principles to guide the task of broadening the health sciences research agenda.
Lenfant, Claude. (2003). Clinical Research to Clinical Practice—Lost in Translation? New England Journal of Medicine, 349:868-874. PubMed
In this manuscript of the Shattuck Lecture series, Claude Lenfant, director of the National Heart, Lung and Blood Institute, presents evidence to show the gap between research and practice and argues why bridging this gap is truly necessary to make NIH and public health institution.
Lindamer, L.A., Lebowitz, B., Hough, R.L., Garcia, P., Aguirre, A., Halpain, M.C., Depp, C., and Jeste, D.V. (2009) Establishing an implementation network: lessons learned from community-based participatory research. Implementation Science, 4:17. PubMed
Implementation of evidence-based mental health assessment and intervention in community public health practice is a high priority for multiple stakeholders. Academic-community partnerships can assist in the translation of efficacious treatments into community settings; yet, little is known about the processes by which these collaborations are developed. This paper discusses the application of community-based participatory research (CBPR) approach to implementation and presents six lessons learned from the establishment of an academic-community partnership.
Mays, G.P., Smith, S.A., Ingram, R.C., Racster, L.J., Lamberth, C.D., and Lovely, E.S. (2009) Public health delivery systems: evidence, uncertainty, and emerging research needs. American Journal of Preventative Medicine, 36(3):256-65. PubMed
The authors review empirical studies published between 1990 and 2007 on the topics of public health organization, financing, staffing, and service delivery. A summary is provided of what is currently known about the attributes of public health delivery systems that influence their performance and outcomes. This review also identifies unanswered questions, highlighting areas where new research is needed. Existing studies suggest that economies of scale and scope exist in the delivery of public health services, and that key organizational and governance characteristics of public health agencies may explain differences in service delivery across communities. Financial resources and staffing characteristics vary widely across public health systems and have expected associations with service delivery and outcomes. Numerous gaps and uncertainties are identified regarding the mechanisms through which organizational, financial, and workforce characteristics influence the effectiveness and efficiency of public health service delivery. This review suggests that new research is needed to evaluate the effects of ongoing changes in delivery system structure, financing, and staffing.
Mitchell, P., Pirkis, J., Hall, J., and Haas, M. (2009) Partnerships for knowledge exchange in health services research, policy and practice. Journal of Health Services Research and Policy, 14(2):104-111. PubMed
Within the health services research community there is a growing strength of feeling that ongoing partnerships between researchers and decision-makers are critically important to effective transfer and exchange of knowledge generated from health services research. A body of literature is emerging around this idea that favours a particular model of partnership based on decision-maker involvement in research. This model is also gaining favour among health research funding bodies internationally. The authors argue that it is premature for the health services community to privilege any particular model of partnership between researchers and decision-makers. Rather a diversity of models should be conceptualized, explored in theory and practice, and evaluated. This article identifies seven dimensions that could be used to describe and differentiate models of partnerships for knowledge exchange and illustrates how these dimensions could be applied to analysing partnerships, using three case studies from recent and ongoing health services research partnerships in Australia.
Pinto, R.M. (2009) Community Perspectives on Factors That Influence Collaboration in Public Health Research. Health Education and Behavior, (Epub ahead of print)
This study serves to improve communicative barriers between researchers and community-based organizations (CBOs) which may lead to better methods, results, and dissemination of interventions. Data from 20 informants in 10 HIV prevention CBOs revealed factors that influence collaborations and are grouped into four domains: (a) Researchers' Characteristics, (b) Collaborative Research Characteristics, (c) Community Partner-Researcher Relationships, and (d) Barriers to HIV-Prevention Research Collaboration.
Schaffer, Marjorie. (2009) A Virtue Ethics Guide to Best Practices for Community-Based Participatory Research. Progress in Community Health Partnerships: Research, Education, and Action, 3(1): 83-90. View PDF
This article provides an overview of virtue ethics theory, identifies common ethical problems in CPBR, and discusses how professional virtues can be used to guide ethical research practice. Best practices for CBPR that consider the well-being of communities are also identified in this article.
Slutsky, J.R. & Clancy, C.M. (2009) AHRQ's Effective Health Care Program: why comparative effectiveness matters. American Journal of Medical Quality, 24(1):67-70. Pubmed
This commentary explains the relevance of comparative effectiveness research—the direct comparison of existing health care interventions to determine which work best for which patients and which pose the greatest benefits and harm—to the decisions that health care policy makers, clinicians, and patients make every day. The authors use the AHRQ'S Effective health Care Program as a well-established model for comparative effectiveness research.
Sullivan, M., Kone, A., Chrisman, N., Ciske, S. & Krieger, J. (2001) Researcher and Researched—Community Perspectives: Toward Bridging the Gap. Health Education and Behavior, 28(2), 130-149. PubMed
Using key informant interviews, researchers attempted to understand the experiences of community members and researchers in community based research projects. The paper discusses elements of a meaningful collaboration including early involvement of communities, power sharing, mutual respect, community benefit and cultural sensitivity.
Westfall, J.M., Fagnan, L.J., Handley, M., Salsberg, J., McGinnis, P., Zittleman, L.K. and Macaulay A.C. 2009. Practice-Based Research is Community Engagement. Journal of American Board of Family Practice, 22(4):423-7. Pubmed
Community engagement has become a major contributor to medical research during the past 10 years and is an essential component of the current National Institutes of health (NIH) Roadmap and the Clinical Translational Science Awards program. But, what is a community? And what community gets to be engaged? The authors of this article provide their definition of community and community engagement as it relates to clinical research. This article also proposes engaging the community in practice-based research networks.
Woloshin, S., Schwartz, L.M., Casella, S.L., Kennedy, A.T. and Larson, R.J. (2009) Press Releases by Academic Medical Centers: Not So Academic? Annals of Internal Medicine, 150(9): 613-618. PubMed
The news media are often criticized for exaggerated coverage of weak science. Press releases, a source of information for many journalists, might be a source of those exaggerations. This paper attempts to characterize research press releases from academic medical centers by analyzing the content and press release quality. This study concludes press releases from academic medical centers often promote research that has uncertain relevance to human health and do not provide key facts or acknowledge important limitations.
Woolf, S.H. (2008) The Meaning of Translational Research and Why It Matters. The Journal of the American Medical Association. 299(2):211-213. PubMed
In this article Steven Woolf, one of the nation's foremost scholars in translational research, defines the field and provides a strong argument for the promotion of T2 research.
Reports
A Participant's Guide to Mental Health Clinical Research. Bethesda, MD: National Institute of Mental Health, Bethesda, 2008. View brochure
This brochure provides answers to common questions about volunteering for mental health clinical research. NIMH is part of the National Institutes of Health (NIH), the primary Federal agency for conducting and supporting medical research.
Achieving the Promise of Authentic Community-Higher Education Partnership: Community Partners Speak Out! Seattle, WA: Community-Campus Partnerships for Health, 2007. View PDF.
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. This report attempts to document the voice of the community partners and allow them to harness their own experiences, lessons learned, and collective wisdom into a national, organized effort to address this issue. It addresses the following questions:
- What is the Current Reality of Community-Higher Education Partnerships?
- What's Working, What's Not Working and Why?
- What's Holding Us Back?
- What is our Vision for the Future of Community-Higher Education Partnerships?
- What Do We Mean by "Authentic" Partnerships?
- How can Community-Higher Education Partnerships More Fully Realize their Potential?
- What are our "Big Ideas" and Recommendations?
- Where Do We Go From Here?
Communities as Partners in Cancer Clinical Trials. Changing Research, Policy and Practice. ENNACT. Seattle: Community-Campus Partnerships for Health and Education Network to Advance Cancer Clinical Trials, 2008, 110 pp. View PDF
This report released in October 2008 was a landmark report on community engagement in cancer clinical research. This report includes more than 50 recommendations for engaging communities in order to:
- reduce barriers to diverse participation in cancer clinical trials (CCTs)
- build partnerships that utilize innovative approaches to increase recruitment and retention in cancer treatment clinical trials, especially among ethnic and racial minority groups; and
- ultimately increase participation of ethnic and racial minority groups in CCTs.
Effective Dissemination of Findings from Research. Chicago, IL: Institute of Health Economics, 2008. View PDF
This report is a collection of essays that grew out of a IHE workshop on effective dissemination of findings. It discusses current concepts and evidence to guide knowledge transfer, provides literature reviews, examines examples of dissemination.
Identifying Characteristics of Successful Researcher/Community-Based Organization Collaboration in the Development of Behavioral Interventions to Prevent HIV Infection. Roussel, A. E., Fan, N. L., & Fulmer, E. , 2002, (Report No. 0621-26 prepared for R. Wolitski, Centers for Disease Control Research Triangle Institute Project Number 6900-026,Research). Triangle Park, NC: Research Triangle Institute. View PDF (156 KB)
This report provides an overview of the theoretical literature in organizational studies on collaborative efforts. In doing so, it describes the types of collaborative arrangements that are commonly used in developing and implementing HIV prevention interventions and details barriers that can contribute to the deterioration of collaborations. It also highlights relevant evidence of the impacts of collaboration, including potential policy implications.
Initial National Priorities for Comparative Effectiveness Research. Washington DC: Institute of Medicine, 2009. View Report Brief
The Institute of Medicine has issued a list of 100 initial top priorities for US federal investments in comparative effectiveness research. A number of the priorities concern school-based and community-based interventions and/or would lend themselves well to community-engaged research approaches.
Promoting Healthy Public Policy through Community-Based Participatory Research: Ten Case Studies, Minkler, M. et al. (2008) Published by PolicyLink. Download the PDF (156 KB)
In collaboration between the School of Public Health at the University of California, Berkeley, and PolicyLink, this report explores 10 case studies of diverse community-based participatory research (CBPR) partnerships around the United States that have in common a commitment to foster healthy public policy. The 10 partnerships examined are in areas as diverse as South Los Angeles, California; New Castle, Indiana; Harlem, New York; and Tillery, North Carolina. These case studies offer a window into the world of community, health department, and academic partnerships throughout the nation that are working to change policy to improve community health, reduce disparities, and foster equity. The report draws on data from dozens of in-depth interviews with partnership members, community focus groups, and policymakers, as well as document review and participant observation.
Recommendations for Research Dissemination. Center for AIDS Prevention Studies (CAPS), San Francisco, 2006. View PDF
These recommendations for research dissemination were developed from the experiences and interviews with community-based organizations and the CAPS Community Advisory Board. These recommendations include how to disseminate research progress and findings, what kinds of research data should be disseminated, and provides examples of effective research dissemination.
Report and Recommendations on Public Trust in Clinical Research. NIH Directors' Council of Public Representatives (CORP), Bethesda, 2005, View PDF
This report is a compilation of recommendations for enhancing public trust in clinical research. These recommendations were derived from a workshop held by the NIH Director's Council of Public Representatives (COPR) entitled, Inviting Public Participation in Clinical Research. The recommendations fall into the following areas:
- Building trust through community partnerships
- Building relationships with patients
- Building partnerships with community providers
- Building trust in scientists
- Building trust in the NIH and scientific research
Researchers and Their Communities: The Challenge of Meaningful Community Engagement. Bethesda, MD: National CTSA Community Engagement (CE) Key Function Committee, 2009. View PDF
In this report, members of the National CTSA Community Engagement (CE) Key Function Committee have synthesized the standards and principles of best practices in community-engaged translational research that were developed during the 2007-08 regional and national workshops and conferences. UCSF's CE Program Manager, Ellen Goldstein, facilitated the day-long Western Region workshop that included community and academic partners from 8 CTSAs
Books
Sobo, Elisa J. Culture and Meaning in Health Services Research: A Practical Field Guide. Walnut Creek: Left Coast Press, 2009. See website
"This highly engaging and very readable how-to book makes a compelling case for why this type of research is necessary and what it takes to get it done in busy clinical environments where researchers must maneuver carefully and be attentive to a system undergoing constant change. Notably, Sobo addresses the contexts in which research results are released and speaks to the power of teaching stories and translational research in a field largely guided by audit culture. The book is timely and speaks to both health social science and health care audiences." —Mark Nichter, University of Arizona