Variation in the interpretation of scientific integrity in community-based participatory health research
Introduction
Community-based participatory research (CBPR) emphasizes the importance of community members participating in every step of the research process (Israel et al., 2005, Wallerstein and Duran, 2006). CBPR prescribes an equitable partnership between professional and community investigators in all research responsibilities (Israel et al., 1998, Israel et al., 2003), emphasizing the importance of co-education and rectification of knowledge imbalances between professional and community investigators (Leung, Yen, & Minkler, 2004). CBPR should lead to social change in addition to producing knowledge (Minkler & Wallerstein, 2003). It requires interdisciplinary collaborations that transcend traditional academic frameworks and create equal partnerships between professional and community investigators (Minkler, 2004). It recognizes that power imbalances between professional and community investigators in traditional research have limited community members to the roles of information providers who seldom receive the benefit of research findings; this has created mistrust and resentment towards research (Israel et al., 2005, Leung et al., 2004, O’Fallon and Dearry, 2002, Savage et al., 2006). CBPR changes the traditional research paradigm and emphasizes sharing power between professional and community investigators to build trust (Holkup et al., 2004, Wallerstein, 1999).
CBPR is essential in health disparities and environmental justice research (Khanlou and Peter, 2005, Leung et al., 2004, Quandt et al., 2001). CBPR projects often focus on health concerns among vulnerable populations. This approach helps investigators obtain internally valid, culturally specific insights into the social and environmental contexts surrounding health and disease through the involvement of community members. These insights facilitate development of conceptually tailored and culturally appropriate interventions, with CBPR being promoted as an appropriate means to translation science (Leung et al., 2004, Wallerstein and Duran, 2010).
The literature describing CBPR has focused on factors that affect community-research relationships and project success (Arcury, Quandt, Dearry, 2001, Israel et al., 2005, Minkler, 2004, Quandt et al., 2001). However, scientific integrity in CBPR projects has also become a concern (Hueston et al., 2006, Minkler, 2004, Wallerstein and Duran, 2006). Scientific integrity can be understood as a set of professional standards and as an ethical obligation (Coughlin, Barker, & Dawson, 2012). A familiar definition focusing on standards is, “adherence by scientists and their institutions to honest and verifiable methods in proposing, performing, evaluating, and reporting research activities” (Panel on Scientific Responsibility and the Conduct of Research, 1992, p. 4). A second definition explores the ethical obligation for scientists and institutions “… integrity embodies above all the individual's commitment to intellectual honesty and personal responsibility. It is an aspect of moral character and experience. For an institution, it is a commitment to creating an environment that promotes responsible conduct by embracing standards of excellence, trustworthiness, and lawfulness and…if an environment with high levels of integrity has been created” (Institute of Medicine, 2002, p. 4).
The discussion of research integrity and CBPR is growing, but has focused on case studies and literature reviews (Buchanan et al., 2007, Cargo and Mercer, 2008; Horowitz et al., 2009, Hueston et al., 2006, Minkler, 2004, Viswanathan, 2004). Concerns about scientific integrity in CBPR include study design, conflicts of interests, and facilitating ethical review by institutional review boards. Buchanan et al. (2007) explain that due to structural impediments inherent in CBPR, randomized controlled trials, the gold standard for rigorous scientific research, often are not possible; while quasi-experimental or one-group designs are often feasible. Resnik and Kennedy (2010) explore balance in the interests between the scientists and the community as a challenge for CBPR. Hueston et al. (2006) examine how IRBs and the participating community can both be knowledgeable in review and approval processes.
The majority of discussions of scientific integrity in CBPR highlight three primary areas of concern. First, project team members have variable norms, expectations, and agendas that are connected to their associations with different disciplines, cultures, and communities. Second, team members have different amounts of research training and methodological expertise. Third, team members have different access to resources (time, money, equipment, staff) (Buchanan et al., 2007, Cargo and Mercer, 2008, Horowitz et al., 2009, Hueston et al., 2006, Minkler, 2004, Quandt et al., 2001, Viswanathan, 2004). These concerns may limit the soundness of CBPR. For instance, a lack of access to time, money, and appropriate research training could limit the scientific integrity of a project by making it impossible to recruit the appropriate participants and complete data collection as specified in the study protocol. Commonly suggested methods to improve scientific integrity include maintaining open and frank dialogue among team members about community needs, the criteria for rigorous science, and how to serve community and scientific interests, perhaps, through mutual compromise; clearly delineating team members' roles and maintaining respect for each member's unique talents, skills, and areas of expertise; and purposefully initiating co-learning between team members that balances team members' knowledge and skills (Buchanan et al., 2007, Cargo and Mercer, 2008, Wallerstein and Duran, 2006).
CBPR is currently not evaluated by any set of specific criteria; however, lists of principles have established the foundation for CBPR (Blumenthal, 2011, Green et al., 1995, Israel et al., 1998, Israel et al., 2005, Viswanathan, 2004). Yet, only one of these lists considers scientific rigor as a concern for CBPR (Viswanathan, 2004). Systematic inquiry into the meaning and interpretation of scientific integrity in CBPR has not been reported. It is vital to understand what scientific integrity means for professional and community investigators involved in CBPR prior to suggesting that scientific integrity is threatened and specifying how it may be threatened. This paper explores variations in the interpretations of scientific integrity in CBPR among a sample of professional and community CBPR investigators.
Section snippets
Methods
This investigation used a qualitative design to delineate perspectives on scientific integrity for CBPR investigators conducting projects in the southeastern US. Interviews were conducted with professional and community investigators from 25 separate projects. Data collection was completed in 2012. The research protocol was approved by the Wake Forest School of Medicine IRB, and all participants provided signed consent.
Scientific integrity
Definitions of scientific integrity were very similar across professional and community investigators. Community investigators described scientific integrity as having uniform methods, with consistent results, and that investigators were honest by presenting all of their findings. Professional investigators' definitions tended to be longer and more detailed, but mirrored those provided by community partners explaining the need for investigators to remain faithful to their methods, follow
Discussion
Scientific integrity is extremely important for professional and community CBPR investigators. Although professional and community investigators share similarities in their interpretations, the differences within and between groups provide insights about CBPR as an approach and the concern about scientific integrity in CBPR projects.
Conclusion
This study is a response to concerns about scientific integrity in CBPR projects (Hueston et al., 2006, Minkler, 2004, Wallerstein and Duran, 2006). These data offer the opportunity to explore the ideas, frustrations, interpretations and needs of professional and community investigators. Salient themes show that professional and community investigators agree that scientific integrity is essential in research; however, what constitutes as scientific integrity for each group differs (Table 4).
Acknowledgments
The research was supported by grant number R21 ES 020967 from the National Institute of Environmental Health Sciences. We appreciate the input from our advisory committee that included: Christine Makosky Daley, Ph.D., Juliet Lee, Ph.D., Molly Martin, M.D., James Allen, Ph.D., Sharon Cooper, PhD., Linda Sprague Martinez, Ph.D., Judith Albino, Ph.D., Jayna Dave, Ph.D., Deborah Parra-Medina, Ph.D., Olivia Carter-Pokras, Ph.D., and in particular Joseph Gallo, M.D., Julia Brody, Ph.D., and Sara
References (32)
- et al.
Staying healthy: the salience and meaning of health maintenance behaviors among rural older adults in North Carolina
Social Science & Medicine
(2001) Is community-base participatory research possible?
American Journal of Preventive Medicine
(2011)- et al.
Participatory action research: considerations for ethical review
Social Science & Medicine
(2005) Power between evaluator and community: research relationships within New Mexico's healthier communities
Social Science & Medicine
(1999)- et al.
Farmworker pesticide exposure and community-based participatory research” rationale and practical applications
Environmental Health Perspectives
(2001) - et al.
Ethnical issues in community-based participatory research: balancing rigorous research with community participation in community intervention studies
Progress in Community Health Partnerships: Research, Education, and Action
(2007) Thematic analysis and its reconceptualization as ‘saliency analysis’
Journal of Health Services Research and Policy
(2010)- et al.
The value and challenges of participatory research: strengthening its practice
Public Health
(2008) Principles of good community—Campus partnerships
(2006)- et al.
Ethics and scientific integrity in public health, epidemiological and clinical research
Public Health Reviews
(2012)
Study of participatory research in health promotion: Review and recommendations for the development of participatory research in health promotion in Canada
Can public health researchers and agencies reconcile the push from funding bodies and the pull from communities?
American Journal of Public Health
Community-based participatory research: an approach to intervention research with a Native American community
Advances in Nursing Science
Community-based participatory research from the margin to the mainstream: are researchers prepared?
Circulation
Protecting participants in family medicine research
Family Medicine
Integrity in Scientific Research Committee on assessing integrity in research environment integrity in scientific research
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