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In this chapter, we will explore key questions from the community partner perspective about engaging in CBPR and the value of this research to the community. This will include an overview of how a community partner should assess its capacity for participation in CBPR. We will also explore the challenges inherent to implementing change based on findings from CBPR. This will also include data-driven decision making and issues relevant to incorporation of evidence into practice. My community partners were instrumental in supporting the writing of this chapter. Ms. Milagro Grullon reviewed the chapter, and both she and Mr. Alex Pirie provided quotes. In addition, quotes from community partners at a recent CBPR conference on building community capacity were also used.1 The coalitions that I worked with in the given examples approved the use of their stories.
The following fictional example helps to illustrate a typical community response to a researcher request.
I am the executive director of a small organization dedicated to serving the Latino community in Community Y. We are currently fairly small, with only two employees. All of us are immigrants and speak fluent Spanish. The mission of our organization is to provide help with access to health care, city services, and other programs for the Latino immigrant community. A researcher from the local university has contacted us and wants to get our help recruiting Latinos for a study on mental health issues. In the past, we had a bad experience with a researcher. He asked for our help recruiting our constituents for a study on high blood pressure. We spent more than a month helping with the recruitment, and while we did get paid for our efforts, our small staff could not do this work and keep up with the work of the organization. Things were very tense. Then, when he completed the research, we never heard back from him about the results until we read them in the newspaper. “Latino males who are overweight are at high risk for hypertension.” We never had a chance to participate in the paper or get the results so we could work with the community to improve the situation. It was a surprise to us and to the people who had agreed to participate. Overall, it felt like we got used, and we are not sure we want to do this again.
In the world of community research, this is not an uncommon situation. What went wrong? There was money shared, and engagement seems to have taken place, but things really seem to have fallen down in the analysis/interpretation and dissemination phase of the research. In this case, it is hard to tell whether the researcher was interested in a full CBPR relationship, but the impact of this research has ultimately increased the divide between the community and researchers, and, most importantly, while it may have contributed to the literature, it has provided little benefit to the local community.
Many community partners may have negative impressions of research influenced by prior historical events such as the Tuskegee experiment, especially in communities of color. They may have had negative experiences with past research projects themselves and feel distrustful of new academic relationships. Additionally, they may be unfamiliar with how research works or what their role in this work might entail.
“Communities have no motivation because these research projects go on yet there is no investment in the community after. Many community members are not interested in being in a registry for research.” (Community partner-conference participant)1
“There is this mistrust of what the aims are for research and what this information will be used for.” (Community partner-conference participant)1
Recognizing that these perspectives may linger long past any one individual research project is an important part of the engagement process. A researcher needs to be aware of the history of research in the community. Community partners need to be empowered to ask the hard questions of researchers so as not to repeat the same mistakes. They need to understand the benefits and pitfalls of engaging in research. Gaining this insight is part of the engagement process and is necessary for the development of a strong CBPR partnership. As a community begins to understand research and its potential power, community members may initiate CBPR projects themselves, recognizing that they need data to catalyze social change in policy and practice.
In our previous Everett example, Everett, one member of an immigrant advocacy group acknowledged the potential benefit of engaging in research. As a member of a community advocacy group dedicated to working with Latinos in Everett, he was very concerned about how recent immigration enforcement activity was affecting the Latino community. Immigrant activists had many stories of how immigrants were being stopped and asked for their driver’s licenses, and then, if they did not have a license, they were arrested. Many immigrants were in fear of their safety, suspecting that this action would result in deportation. The immigrant advocacy community wanted to get more information on this situation to convince the police to stop arresting people for not having a valid driver’s license. They had made a connection with a local researcher that they already knew and trusted when a grant opportunity arose. They asked her to help them get the data needed to actively change the situation. In this example, the Everett community partners recognized that data collected through “research” might help them advocate for action. This academic/community partnership was built on an existing trusting relationship.2 While not all CBPR partnerships will be initiated by the community and all questions will not be solely originated in the community, using a CBPR approach resets the researcher’s agenda such that the topic of study resonates with community priorities and is seen as beneficial to the community. Community members should expect that their priorities will be considered and that their perspectives will be valued in the research agenda and subsequent process.
ASSESSING COMMUNITY RESEARCH READINESS
“How do you justify this money being spent on research? Communities have real issues that money could help solve and yet this money is being given to research—how do you prove the benefit and then share the money so that it benefits the community (immediately)?” (Community member-conference participant)1
As noted previously (Chapter 2), it is important to assess the impact that engaging in research will have on the community. The areas outlined below are important for community members to address prior to engaging in a CBPR project.
ASSESSING THE PARTNERSHIP
The first area that community partners will need to assess is the nature of the CBPR partnership itself, the values, goals, and priorities.3 What type of partnership is planned? How much power will the community members have in decision making? Is the researcher intimidating? Is he or she skilled in participatory techniques? Does she or he speak in layman’s terms and understand the community perspective? Is there a history of trust and respect?4 Is the researcher’s agenda shared by the community?
“Today, decisions are made by prioritizing and based upon the needs in the community. From a program perspective we need research to help implement the correct programs in our community. Prioritizing according to need can yield rich data to support programs and interventions. Again, what makes a project appealing is the need and if the community has identified what is being presented as a priority for them.” Milagro Grullon, Lawrence, MA
In order to learn more about the researchers, their goals, background, and expectations of a partnership, a face-to-face meeting should be held, and community members should have a chance to ask these questions and determine if the CBPR project is right for them. Questions outlined in Table 5.1 are a good place to start. In addition, the city of Lawrence, Massachusetts, developed a “tools for research partnerships” document that can help community partners build their formal agreements with researchers.5 As one partner noted related to the choice of an academic partner:
“Is this a person you can spend the next year or four years working with closely? Is she or he someone you can comfortably disagree with? Are they sympathetic to the complexities and nuances of communities and willing to step outside of their traditional bubbled and siloed turf to connect with the community?” Alex Pirie, Somerville, MA
Table 5.1 Questions for Community Partners
Questions for community partners to ask researcher prior to engaging in CBPR
Questions for community partners to ask themselves prior to engaging in CBPR
TIME, RESOURCES, AND CAPACITY
As part of the development of a partnership pre–CBPR, community members should ask specific questions in three critical areas to assess their own readiness for research: time, money, and capacity. That is, do they have the time to participate without sacrificing their other responsibilities, are they going to get appropriate financial resources from the researcher to support their work, and do they have the organizational capacity to participate in the research project? Each of these issues can create problems if resources are inadequate for the project. For example, if the organization and the staff do not have time available to participate in the CAB meetings or to actually conduct their roles in the research, they will be unable to fulfill their responsibilities and the research will fail. As one community member said:
“The single largest obstacle to collaborations between academic and community partners is time. The relative time frames of academic and community partners can create huge problems and it is essential that whichever of the two sides of the partnership is more experienced do everything it can to educate the other on the discontinuity that exists.” Alex Pirie, Somerville, MA
In many organizations, particularly small ones, it is not feasible to just hire additional people to take on the new work of a research project. So who will do the work? What are the implications for the organization? In addition, there is time required to participate in CBPR partnership meetings and time required for the development of proposals and dissemination products. Finally, sometimes, it can take several years before a research grant is funded. Any community partner must consider where it will be in the future and whether it is able to plan that far in advance.
Where the money is concerned, budgets should reflect an equitable process between community and academic partners. Community partners have not always been included in these decisions.
“When I first started working with academic institutions (12 years ago) I had no involvement with budgets. I was given an amount for participating as a [representative of the] community without being asked how many staff would be involved or the hours we would spend on the project. We realized shortly after the grant started that the demands on the staff and community were greater than the funds could sustain.” Milagro Grullon, Lawrence, MA
As one prepares a grant proposal, both community and academic participants should assess whether there is adequate support for a CBPR project. Financial support is needed for items ranging from community coinvestigators, liaisons, space, meetings, and advisors to travel and dissemination. It should reflect the division of labor between academics and the community.
“Depending on the involvement and time spent in the research, resources should be divided accordingly. The community is asked to participate and do a lot of work (meetings, gather data, interviews, invite community members, go on the radio, etc. etc.). Without the community, some of the research could not take place. Researchers need the community, and the community needs to get paid justly.” Milagro Grullon, Lawrence, MA
Table 5.2 shows an example of a CBPR budget for a project that included focus groups and surveys. The dollars for various items (stipends, food, etc.) can either sit with the academic or the community partner, depending in large part on their ability to distribute the money. In some cases, community organizations may see a CBPR project as a way of accessing dollars for needed infrastructure and programming. However, the research dollars are not flexible and cannot be spent on nonresearch-related items. Regardless of how the ultimate budget looks, it should be negotiated up front, and any further reductions that might be required if the grant is funded should also be discussed with the partnership prior to starting the project.
Ms. Grullon recalled:
“The second time around, when an institution came to me for help or to develop a (pseudo) partnership, I started making clear demands. I needed to see the budget and be included just as any researcher would be listed on the budget. I worked on a budget for the organization and the community members that would be involved.” Milagro Grullon, Lawrence, MA
Table 5.2 Proposed CBPR Project Budget
Source: Reproduced by permission from Institute for Community Health, Inc. Cambridge, MA 2011 www.icommunityhealth.org
While differences in salary ranges can become a source of conflict, a bigger issue for many community partners is the high rates of indirect costs that most academic institutions claim. This can be a source of great tension in CBPR. “Indirect” rates are related to costs that include physical plant, research administration, and so forth, and they are negotiated with the funding institution. As one community member said:
“When people congratulate us and say, ‘wow, you got a million bucks to study X, Y, or Z!,’ I say, well, no, we got about 45% of that, the rest goes to mow lawns and trim ivy at the University of Wherever.” Alex Pirie, Somerville, MA
In general, these dollars do not flow directly to the principal investigator but, rather, are used by the institution to support operations. While some community agencies have successfully negotiated an indirect rate with funders, this is not always the case. Thus, how they support their operational needs (rent, secretarial support, utilities, and payroll) comes into question. A community organization needs to discuss strategies for covering these costs with the researcher either as an indirect rate, if allowed, or by putting these items into direct costs. Without these transparent negotiations, the budget can become a major source of conflict.
The capacity of the community partner may include things like current staffing, financial health (cash flow, total budget, grant management skills), and physical space. For example, can the organization accommodate the research given its personnel issues (turnover rates, skill sets, etc.)? Are there procedures in place to deal with contracts? Is there enough cash flow to conduct the work and then invoice for work done? How will the research impact the day-to-day operations of the organization? Any community partner or member of a community organization should consider these issues prior to agreeing to participate in a CBPR project.
It is also important to remember that research is relatively inflexible compared to program implementation. This “rigidness” is needed to answer the research questions effectively. If the intervention keeps changing or the staff leaves and new staff must be retrained, it poses a problem for the research. Data need to be collected on every participant in a consistent manner. Records about why participants did not participate as well as how many did or did not participate must be maintained. If a survey is done but no one knows what the total number of potential participants in the target group was, it will be impossible to calculate the response rate. While these may be seemingly simple steps, in practice they can be a major challenge. In the Everett project, surveys of community doctors were done, but the process of figuring out exactly how many community doctors were serving Everett populations turned out to be much more complicated than expected. Community partners wanted to send the survey out to as many providers as possible to generate a high number of responses, but researchers first needed to figure out how many providers were serving the Everett community. In other words, they needed to know the denominator so that they could understand whether the final sample was representative of the total group of providers. A similar situation happened when community partners wanted to survey immigrants. They held several forums and passed out surveys but were unable to keep track of who refused to fill out the survey or even how many potential participants were at the forum. Researchers found themselves counting attendees and trying to keep track of who got surveys, who filled them out, and who threw them in the waste-basket. In the end, they were unable to determine what percentage of attendees actually did fill out the surveys.
Sampling concepts may be foreign to community groups, who may have little experience with obtaining responses in a systematic way. The tension between action and rigor may create conflict with the organization’s culture and capacity. After all, communities do not exist in a laboratory bubble. Unexpected events transpire that may have a deep impact on a research project, ranging from turnover in local leadership to new and emerging social issues. Service demand may interfere with scientific methodology. While not all research will require the same level of rigor, adherence to a protocol really matters. For community partners, this may present a very different approach to conducting business. The research will need to get done on schedule to achieve the aims set out in the proposal. CBPR is often a balancing act between the researcher’s need for control to achieve scientifically valid results and the community’s desire for action. Successful CBPR partnerships are able to navigate these challenges via mindful communication and planning.
DATA COLLECTION, OWNERSHIP, AND PROTECTION
“Data is not a four-letter word. Advancing the field and advancing the science [will only happen] because we have done good research and then it will help.” (Community partner-conference participant)1
Data and their collection, security, use, and ownership is an area that requires some forethought in CBPR. Given that CBPR represents a partnership for both community and academics, the data are the property of both. How they are handled, analyzed, and disseminated is therefore important for both. As noted in previous chapters, some of these issues can be sorted out and recorded in a memorandum of agreement. In our Somerville CBPR youth suicide example, the researchers were helpful in translating real-time data into usable information for community partners. They provided the analytic capacity to examine the youth risk behavior data and identified additional data sources that were useful in monitoring suicide and overdose activity. These included death certificate data, 911 call data from the fire department, and hospital data on use of the emergency room related to suicide intention and overdose. They were able to provide these enhanced data to the community for real-time decision making. In addition, they were able to map data from the 911 call information onto maps of the community. This helped provide a contextual framework that allowed community members to focus their attention on specific areas. The data were generally “deidentified,” meaning that information that would identify a person was removed before reporting to the CAB. No one would be able to identify the individuals, thus maintaining their privacy. The concept of data privacy is an important one in CBPR. Working with community members who may know each other could put privacy at risk. In CBPR, it is particularly important to work through these privacy issues prior to sharing data. In Somerville, the CAB agreed to a level of privacy that would not allow reporting when numbers were small (< 5).6
The Somerville project is an example of using data for decision making in real time. While community members bring a wealth of tacit knowledge to the table, they are not always equipped to evaluate their efforts. Thus, the ability to use and analyze data in a more rigorous fashion may help to promote improvement. In CBPR, data can serve both as means to a research project end and as quality-improvement information for community partners. As noted, the translation of evidence to everyday practical solutions is a critical component of the CBPR process. The CBPR researcher is, in effect, a purveyor of data, design, and methods that will facilitate this translation. Key to this translation are the skills to communicate and the desire to utilize. The CBPR research process resembles the Plan Do Study Act cycle in quality improvement.
To a community partner, the collection and management of these data thus have implications for the present project but also, potentially, for future programmatic and policy decisions. Community partners should be very thoughtful about how the data will be housed and about how decisions about present and future analysis will be handled. The misuse of data can seriously undermine any future research efforts and potentially fracture a CBPR partnership. Setting out strict standards about data use at the beginning of the project can be beneficial. Table 5.3 is an example of an explicit policy regarding data confidentiality. This will be discussed at length in the next chapter.
Table 5.3 Data Ownership and Confidentiality7
There should be an explicit agreement between researchers and community and university partners with respect to ownership of the research data. The nature of the agreement will be determined on a project-by-project basis, as the community needs/requirements may differ (i.e., a school, a department of health, and a coalition may require different agreements). This agreement should be made prior to the onset of the project and revisited during the project with the project-specific working group.
Research projects will adhere to the human subjects review process standards and procedures set forth by the appropriate institutional review board. In addition, research partners will adhere to standards of school departments and community-based organizations when appropriate.
All investigators and research associates need to be certified for human subjects work.
All persons who work with data (including visiting scholars and graduate students) will be required to sign a pledge of confidentiality for data use.
In general, we will not publicly report data with a cell size less than 5 subjects. Suppression of cell sizes < 5 in reporting will be considered the general rule to protect the confidentiality of subjects. However, any agreement requiring larger numbers for suppression will supersede this rule.
Source: Institute for Community Health, Cambridge, MA 2012.
DISSEMINATION OF FINDINGS
“The time delay between the conclusion of a research project and the publication of papers is always a problem. This is a period of time when, because of the constraints of journal publication, there is a virtual embargo on the results except in the most general way, and it drives the community side nuts. ‘Hey, we know this, we want to do something with/about it!’” Alex Pirie, Somerville, MA
Identifying the results of CBPR research is the first step in translating evidence into actionable efforts. As is part of the CBPR process, the community is generally interested in using the results to make change. Change can be actualized in many forms: new programs to address needs, changes in existing programs, policy change at the local and state levels, and advocacy efforts. Findings make their way into these venues in multiple fashions. Program directors that have access to the information can incorporate it into their day-to-day work. Advocates can promote the results with their city councilors, aldermen, and legislatures to move an agenda forward; constituents can use the evidence to improve their own situations. This is one of the most important value-added benefits of participating in CBPR efforts.
“Don’t save dissemination [or evidence] translation until the end. Systemic changes are key. Wait for results of qualitative + quantitative research to see what worked and let the community know. Policy + systemic changes has built sustainability. Make it a priority to have dialogue with community [and] key stakeholders.” (Community member-conference participant)1
In all research, the findings are not always what one might expect. Sometimes, results do not reveal the answers that one is seeking, or they reveal unexpected information that may be particularly controversial. How will the partnership deal with conflictual and potentially controversial results? Will community members want to censure the results? Will they want to reframe the discussion? Community partners need to be prepared for these possibilities and discuss how they will deal with results in advance of their delivery. In CBPR, the community partners are part of the analysis and interpretation phase of the research, and this will help in the management of the dissemination process because of their involvement in interpretation. However, from a community perspective, if you go into a project to prove something or to demonstrate how well your program works, you may be disappointed. Community partners need to be realistic about what the research can provide and discuss various possibilities for how they will deal with positive, negative, or neutral results with their academic partners well in advance of fielding the research.
The definition of dissemination may be very different for academics and community partners. Community partners want to get the information into the hands of policy makers or service providers in the form of reports, press coverage, or community meetings. In our Everett example, the community partners requested that data be presented to the community in a public forum at the end of the project so that community members could make recommendations for action. They were adamant that this needed to happen quickly so as not to lose the momentum of the project. In addition, given the focus of the work, the timing regarding the larger context of immigration enforcement was opportune. The researchers would have to wait to work on publications for peer-reviewed journals until after this was done. Together, they decided to present the data in a digestible format to an audience convened by the community partners, who included local government as well as immigrants themselves. They also requested that community members have an opportunity to consider recommendations for action based on the study. This engagement was built into the forum agenda. Participants broke up into different language groups and worked together to answer key questions and provide recommendations. The final product was a set of policy and practice recommendations that was provided to leaders in the community. Many were then utilized to change police-immigrant relationships and address health care access issues.2 Afterward, the researcher and community partners developed several papers for peer-reviewed journals. The emphasis for dissemination was different for community and academics. Several other dissemination options were also used that particularly spoke to advocacy, including a press release to local papers, a letter to the Boston Globe, and several submissions to pertinent blogs. The dissemination plan for the project has since taken multiple forms.
TRANSLATION OF EVIDENCE INTO PRACTICE
“We always have to examine whether or not we are doing what we hope to be doing. But this is difficult because we get invested in what we are doing and taking a critical examination is not always easy.” (Community member-conference participant)1
Dissemination of study results jump-starts the process of translation/adoption of evidence into practice. As people hear about the ideas, they are likely to consider how to implement them. In addition, if the findings are strong, they may influence how programs are run and, more importantly, whether programs continue to exist. Some of the decisions about translation and sustainability may depend on the project topic. For example, if community members wanted to test an intervention, there may already be tacit agreement to adopt the findings, when available, or to change or adapt the program to improve it. The CBPR process is also making all kinds of new evidence available, including literature reviews, information on evidence-based practices, and existing data for use in this CBPR process. There are often unexpected outcomes of CBPR that may not have been the primary focus but are results of multidisciplinary approaches that start with academic/community partnerships. Certainly, if adoption is contingent on money, translation and sustainability might be harder to achieve. But the results of one study provide the foundation for the next. In Everett, the community took the results and translated them directly into actionable steps. They launched police/immigrant meetings. But they also used the data to obtain additional grants on racism and food insecurity and adolescent risk behaviors. The data continue to have a life after the project. In Somerville, the community continued its vigilance by monitoring 911 activity after the suicide/overdose crisis. They hired a mental health coordinator who is still in place. In Cambridge, the work is ongoing, and the partners have written several other grants. While the project provides new data for communities, it also shapes the researchers and their agendas. They benefit greatly from the colearning of the partnership.
Overall, community partners should expect any CBPR researcher to be aware of the impact of a CBPR project on a community at all different phases. This includes the impact on community partner capacity, mission, and time. Researchers should recognize from the beginning that shared goals for a project need to be discussed and mutually decided. Dissemination strategies take many forms, and communities perceive action—local action—as an end product. A CBPR researcher should understand what the incentives for community participation are and simultaneously acknowledge her or his own. Thus, as a final portion of this chapter, we offer a list of questions that a researcher should consider prior to CBPR engagement.
Researcher Questions to Answer Before Getting Involved in CBPR
A researcher who puts him- or herself in the community’s shoes and understands the community’s perspective will go a long way toward supporting the CBPR process and improving the level of trust in community/academic relationships.
“The strategy is to form it [the research] around a very clear, specific issue that everyone feels invested in. Then you can start building the trust and relationship.” (Community member-conference participant)1
Community partners who wish to engage in CBPR should be aware of the benefits as well as the challenges of this approach. They should be thoughtful about their own research readiness and aware of the realities—the responsibilities and the potential outcomes—of engaging in a research project. They should seek a balanced partnership in which their voice is heard and their viewpoints considered. Most importantly, they should consider how the outcomes of CBPR will help their community, however that is defined. Knowledge is powerful. CBPR is an approach to gaining knowledge that can empower communities. Thus, a well-designed CBPR study is more likely to encourage strong, trusting relationships that cross academic/community boundaries and improve the translation of both evidence-based practice and practice-based evidence into practical solutions for real-life problems.
QUESTIONS AND ACTIVITIES
Have students break up into small groups to discuss the following:
A community group had garnered a grant to develop and implement a program for African American men to improve cardiovascular risk factors. The program was well liked by participants and by local politicians. But they had no idea if the program made a difference in participants’ health. Initial data were promising with regard to satisfaction and engagement of the participants, but there was no evidence that the outcomes (BP, cholesterol) were changing. There was a great deal of investment in the program, and a publication that did not say “the program was working” would put the program at risk financially. They engaged a local CBPR researcher to work with them and try to evaluate the impact of the project.
What are the potential pitfalls in taking on this project?
Describe the community perspective and their incentives underlying this work.
How would you disseminate results?
What types of products might bring added value to the community?
Have students interview other CBPR researchers to ask them about their projects and how they approached the steps or a particular step outlined in this chapter.
If possible, have students sit in on a meeting between CBPR researchers and their community partners and observe the process. Then have them identify where they are in the research process and whether they adhered to CBPR principles during the meeting. What went well and what was challenging?