By Robert J. Joustra September 6, 2013 The Center for Public Justice:
“Over at the Acton Institute, they’re fond of saying that power corrupts, and the bank of evidence is pretty hefty. Even Andy Crouch has turned his prodigious faculties to the problem of power and the Gospel in his book Playing God: Redeeming the Gift of Power. Just how do we parse this Jesus, who spent so much time sticking it to the man, when we Christians become the man?”
“White House Office of Faith-Based and Neighborhood Partnerships” wiki
“OFBCI was established by President George W. Bush through executive order on January 29, 2001, representing one of the key domestic policies of Bush’s campaign promise of “compassionate conservatism.” The initiative sought to strengthen faith-based and community organizations and expand their capacity to provide federally-funded social services, with the idea having been that these groups were well-situated to meet the needs of local individuals. As Texas governor, Bush had used the “Charitable Choice” provisions of the 1996 welfare reform (which allowed “faith-based” entities to compete for government contracts to deliver social services) to support the work of faith-based groups in Texas.”
“Community-based participatory research”
“Community-based participatory research (CBPR) is a partnership approach to research that equitably involves, for example, community members, organizational representatives, and researchers in all aspects of the research process and in which all partners contribute expertise and share decision making and ownership. The aim of CBPR is to increase knowledge and understanding of a given phenomenon and integrate the knowledge gained with interventions and policy and social change to improve the health and quality of life of community members” wiki
Commentary: “Research” in Community-Partnered, Participatory Research
Kenneth Wells, M.D., M.P.H. and Loretta Jones, M.A.
“In many underserved communities, research is a loaded word that sets expectations of being examined or exploited.1, 2 This is more likely when data are published but not otherwise shared, such as in a community forum. Research, whether intended or not, may disadvantage groups through highlighting problems and not assets. Research can thus become a symbol of distance between community reality and the “ivory tower,” where few mechanisms exist to facilitate community access to knowledge. Academics may view pursuit of knowledge as paramount and in entering research partnerships take such perspectives personally rather than as an expected subject of ongoing discussion.3
The fact that research is a “loaded” word suggests that it is associated with a power that is important to understand. When members of underserved communities are reminded of everyday uses of research such as seat belts, the sense of alienation the term conveys can disappear. Vulnerable communities can place a high value on processes that advance knowledge, provided there is trust in the people and institutions.3
In community partnered participatory research (CPPR), partners are valued equally and collaborate jointly in research development, implementation, and dissemination.3 Those involved learn to appreciate that knowledge comes in many forms, including data, experience, history, and perception. An authentic partnership must use all means of discovery at its disposal to make progress in understanding how to benefit the community and advance science. To do this, it is important to maintain respectful engagement across diverse ways of viewing and gaining knowledge, and to anticipate and embrace the struggles and conflicts inherent in balancing perspectives. The word research when used in this context affords an opportunity to build trust.
Webster’s Dictionary defines “research” as: “1. careful or diligent search; 2. studious inquiry or examination, esp: investigation or experimentation aimed at the discovery and interpretation of facts, revision of accepted theories or laws in the light of new facts, or practical application of such new or revised theories or laws; 3; the collecting of information about a particular subject.” 3, 4
Regarding the 3rd definition, in CPPR it is important to consider how the research issue is chosen and whether it is a matter of community importance; to have transparency about how information is collected and by and for whom; and to assure that the work develops community and academic capacity to utilize the research products. Underserved communities particularly value approaches that prevent problems or foster hope.3, 5
The first definition above emphasizes care and diligence. Although scientists who are unfamiliar with partnered research may believe that it is not rigorous, such research is based on the expectation that all involved embrace diligence. No one wants sloppy research to inform medical care. The goal is to conduct research that all partners respect as diligent from their own perspective, which can involve compromise and new solutions.6
In the second definition, the word “studious” can suggest either diligence or classroom exercises of little relevance. In CPPR, community and academic participants are valued equally even if roles differ. Academic investigators become part of the community and community members co-direct the research, shifting its purpose and process. Limitations of academic experience in the community are balanced by community “PhDs of the sidewalk.”
The words “investigation and experimentation” in the second definition can sound neutral or suggest being manipulated. In CPPR, the process is one of mutual engagement in a serious effort to improve community outcomes and advance knowledge, in which the full range of methods should be available. Partnered choices of rigorous designs are achieved through two-way discussions of what various designs offer and how communities engage. Design features such as respect for treatment preferences or wait lists for resources can improve the fit of experimental design and community context, while enhancing the feasibility and meaning of the research. Research of this type is “with” community and academic participants rather than “for” community by academic leaders.7
For complex projects using experimental designs, successful implementation requires efforts to support knowledge of methods in some depth maintained by community sources.7 Achieving this resource over multiple projects requires a community-owned infrastructure. For instance, a community center of excellence for health research emerged in Los Angeles under the leadership of Healthy African American Families and several academic and funding partners.8 Such a center could facilitate community contributions to and uses of research through libraries, trainings and community engagement events, supported by a community internal review board. Achieving community ownership is challenging under funding priorities that reinforce universities for research infrastructure. There are outstanding examples of sustained partnerships supported by grants and other resources.8, 9 Lack of independent funding means that community infrastructure relies on grants managed by academic partners, which is not ideal for true co-ownership.
The second definition of research references diverse perspectives on laws and theories, in terms of which are universal and adequately tested, by whom, and for what purpose. Laws and theories once thought to be universal have been proven to be limited, as the theory of relativity redefined classical mechanics. Laws and theories are subject to cultural perspectives, including the views of those generating the research and setting the science agenda—a leadership group that has not consistently represented vulnerable populations. Some culturally-based theories of importance in underserved groups are not fully accepted as science because they have not been formally evaluated or studied only through alternative approaches, such as embracing cultural history or norms.10 In their work, academic investigators may act as though their way of knowing is more valid than such alternatives, but in their personal lives may not be so sure. This tension plays out with a different balance in underserved communities, toward personal and collective experience, leading to diverse expectations across groups. If academic and community partners share perspectives as trust is gained, common ground can emerge for concepts and theory that guide research.6
In CPPR, researchers seek humility concerning truth and attempts to understand the history and meaning of facts and theories. It is important to remain open to diverse perspectives, even when focusing on design and methods. Efforts to maintain that openness are part of the rigor of partnered research.
This stance of humility pertains to interpretation, referenced in the second definition. Given different perspectives on truth, and the difficulty of arriving at shared perspectives given real differences in power and access to knowledge, those involved in partnered research value partnered interpretation. What do the data mean and to whom? What findings help celebrate community strengths as well as clarify needs, not from a distance but from within its core?
Leveling the playing field, overcoming barriers through honoring diversity, committing to excellence in two-way knowledge transfers, building capacity for healthy communities while advancing knowledge and sharing the lessons: this is the “research” of partnered research.”
“Guidance on Engagement of Institutions in Human Subjects Research”
“Intervention includes both physical procedures by which data are gathered (for example, venipuncture) and manipulations of the subject or the subject’s environment that are performed for research purposes. Interaction includes communication or interpersonal contact between investigator and subject. Private information includes information about behavior that occurs in a context in which an individual can reasonably expect that no observation or recording is taking place, and information which has been provided for specific purposes by an individual and which the individual can reasonably expect will not be made public (for example, a medical record). Private information must be individually identifiable (i.e., the identity of the subject is or may readily be ascertained by the investigator or associated with the information) in order for obtaining the information to constitute research involving human subjects.
Institution is defined in 45 CFR 46.102(b) as any public or private entity or agency (including federal, state, and other agencies).
For purposes of this document, an institution’s employees or agents refers to individuals who: (1) act on behalf of the institution; (2) exercise institutional authority or responsibility; or (3) perform institutionally designated activities. “Employees and agents” can include staff, students, contractors, and volunteers, among others, regardless of whether the individual is receiving compensation.”
“If only it were all so simple! If only there were evil people somewhere insidiously committing evil deeds, and it were necessary only to separate them from the rest of us and destroy them. But the line dividing good and evil cuts through the heart of every human being. And who is willing to destroy a piece of his own heart?”
-Aleksandr L Solzhenitsyn
The Gulag Archipelago