Managing Human Subjects Research Projects: A Tool Kit for Project Managers
2. Involving Community Members in Health Research
In addition to the strategies outlined previously, the PI and project manager may need to involve community members in implementing some or all of the research project endeavors. This section highlights information to consider when involving community members in health research.
2.1 Involving Community Members in the Research Process
Community based participatory research (CBPR) is a type of research that intricately involves community stakeholders in all aspects of the research process, from planning the study design through implementing and finalizing the study. As the project manager of a community based participatory research project, you may be asked to develop ways to identify and/or work with community stakeholders. In most cases, the principal investigator will identify key individuals in the target community who have similar goals and who can mutually benefit from working together in partnership; however, the PI may also ask the project manager to come up with ways to identify these stakeholders and to approach them.
Community stakeholders should be invited and made to feel like a welcome addition to the research team. Roles of community members should be discussed when invitations to participate are extended. It should be clear to all parties (research team/committee members) that community members are not only expected to attend research meetings, but should be included in making decisions about how to approach the research question in the target community. The project manager can ensure that community stakeholders are active participants in the research process by:
- Setting up a plan for alternating between the institution and community for regular research meetings, ensuring that meeting times remain convenient and verifying periodically that the operating procedures are still mutually agreed upon.
- Brainstorming ideas about the research questions and how to approach them within the community.
- Assessing barriers and facilitators to developing and implementing interventions for the target community.
- Including a "Community Report/Update as a regular agenda item.
2.2 Recruiting Community Advisors
Community advisors are typically members of the target community who accept the responsibility of communicating the goals of a research intervention and eligibility requirements to other community members who may participate. Community advisors play an integral role in the implementation of research programs in the target community and often themselves disseminate the intervention to research participants. They may also advise researchers on how to communicate the goals and objectives of the research study. Because community advisors act as liaisons to the rest of the community, it is essential that the project manager remain in regular contact with them to assess anything that may prove problematic to the success of the program. Community advisors should:
- Be selected based on their status in the community.
- Be provided information about basic research principals.
- Be provided with whatever they need to accurately communicate the information that is a part of the intervention and to reach the outcome goals of the program.
- Provide researchers with the basic principals for working in the community.
As a project manager working on a new study that will involve community partners, you should consider the following questions as you embark on your search for key community stakeholders:
- What are the criteria for defining a key stakeholder within my institution, according to the principal investigator of the study?
- What individuals are most respected as leaders in the community? (This can be assessed using a brief survey question that can be asked of various individuals in the target community. For example: To whom do you go in the community for help and advice about community or other issues?)
- What does the PI feel is the most important issue to deal with in the community? What key community stakeholders share the same priority?
- Of the community stakeholders who share the same priorities about important community issues, who is willing to play a leadership role in organizing the community around this set of issues?
When key community stakeholders have been identified and grant preparation or funded grant activities begin, the project manager may be responsible for continued rapport building with community members. There are several ways to build rapport with key stakeholders in the community:
- Attend community meetings to get a personal view of what is important to community members.
- Invite community members to research meetings to allow them a full view of the research process.
- Avoid using a condescending tone in communications with community members.
- Acknowledge community members' expertise.
- Avoid making assumptions about community members' knowledge, or lack thereof, about research.
2.3 Interacting with Community Partners
It is often the case that communication with community partners ebbs and flows, with the most intense involvement occurring at critical points as dictated by the grant application and project deadlines. There is much discussion as the application is being prepared, soon after news of the award is received, when progress reports are due, and when new applications (e.g., pilot projects) are in development. Regular communication with community partners varies with each project and can reflect the philosophy and expectations not only of the investigators, but also of the community partners. In many cases, community partners are actively involved in regularly scheduled meetings and sub-committee tasks.
Project managers can play an important liaison role to the community and be perceived as a trusted communication source by:
- Ensuring that notices of meetings are disseminated in a timely manner, particularly to community partners who may have to travel distances and work around less flexible schedules.
- Facilitating input and arranging conference calls if members are not able to attend in person.
- Maintaining consistent, purposeful contact with partners via telephone, newsletters, and e-mail.
- Obtaining feedback from partners regarding previous meetings, particularly from individuals who may have been silent or in instances when dialogue had to be curtailed because of time constraints.
- Attending community-sponsored events related to the Center program.
- Objectively representing the articulated community point of view to academic partners while conveying the investigator/university point of view to community collaborators.
2.4 Promoting Your Research Study
Due consideration should be given to the methods by which the research team will promote participation in the research study. Recruitment methods, as well as relevant exclusion criteria and incentives, should be discussed early and often, and should benefit from the wisdom of the community partners. Community partners often have insight about how best to reach members of the target community. In addition, there are several communication strategies that have proven effective at promoting community-based research. Paid television, newspaper, and radio advertisements can be useful if it is within the project budget to use such methods. Free placements, such as public service announcements via local media and local newsletters, also can be worthwhile to pursue.
Working with community advisors to schedule meetings and presentations with community leaders and residents about the research project and its goals may help to build rapport between the academic institution and the community, and get the word out about your study. Further, if it is feasible to do so, hiring local community members as surveyors may help to build trust.
2.5 Linking the Community with Resources
Project managers have access to a myriad of university resources that community partners may find useful and beneficial. To increase the likelihood that relevant information is shared, project managers should familiarize themselves not only with the Center-related resources that may be available, but also with resources that support the overarching mission, goals and programs of participating community organizations. Information should be shared equally among all community partners. The project manager can facilitate a relationship that ensures support for the community organizations by:
- Creating a master e-mail and mailing list for key community partners.
- Incorporating information about community partners and organizations on a study Web site (including links to organization Web sites, if applicable).
- Forwarding information on possible funding opportunities (new grants, requests for applications) that focus on areas in which partners have expertise.
- Providing fliers and information on new research studies that are opening on campus in which they or members of their community may be interested.
- Inviting partners to attend university seminars, educational programs and workshops.
- Developing an extended database that includes contact information for other community agencies and
organizations to provide updates on study progress, new developments and other major studies that may be initiated in the community.
2.6 Disseminating Research Findings to the Community
As is the case with determining the best methods by which to recruit participants for a research study, the community advisors can help to inform which dissemination mechanism will work best to communicate research findings in a particular community. Toward the end of a study, the project manager may either spearhead or oversee the process for disseminating important information about study findings to the study participants and to the community from which the data were collected. Not only is it important to share the research findings with the community, it is equally as important to convene a forum in which community members can voice their opinions about the findings and how they were presented. One mechanism by which both reporting research findings and obtaining community feedback can be accomplished is through a community forum or symposium.
Planning a Community Forum
There are several steps to consider when planning a community symposium.
Before the event:
- Review the budget for a symposium with the study PI. If funds are low, consider partnering with a community organization or academic institution that serves the same community and shares the same health-related concerns.
- Meet with your community advisors to determine the agenda and date for the event and to get an estimate of the number of attendees.
- Determine a location. A community forum should be held in the heart of the target community, or someplace that is easily accessible by the majority of its residents.
- Send "Save the Date" fliers to community organizations (e.g., faith based organizations, community health, etc.) so that the information can be included in event calendars.
- Advertise the event in local print media (community newsletter, city newsletter, etc.) and radio, as the budget permits.
- Develop an expanded agenda that gives a step-by-step description of everything that should take place during the forum, and the time slots in which those tasks should take place.
- Explain to all staff and volunteers who will work during the event what their job will be (e.g., register participants, usher participants to a seat, provide materials, etc.).
During the event:
- Make sure all helpers arrive 45 minutes to an hour prior to the start of the event.
- Talk with community members; ensure their comfort.
- Allow room for flexibility in the agenda.
- Allow adequate time for community members to provide feedback.
After the event:
- Debrief about the event, soliciting feedback from community members.
- Schedule a meeting with the research team and community advisors to discuss feedback in more detail.
- Assess how to act on feedback, if needed, in a way that community members know that their suggestions are valued.
Obtaining Community Feedback
There are a few ways to receive community feedback on the research and research findings:
- Focus/discussion group: Break off into discussion groups after the presentation of research findings during a community symposium, and obtain feedback in a structured way.
- Evaluation survey: Encourage members to complete an evaluation survey at the end of the symposium.
- One-on-one feedback: Interview individual members in a structured way. The project manger can take qualitative notes about discussions with individual community members during or after the event.
2.7 Establishing and Maintaining University/Community Subcontracts
Investigators were required to demonstrate existing linkages with community-based organizations and to design, conduct and evaluate a community-based research initiative related to and consistent with the theme of the CPHHD. Thus, in most instances, budgets for subcontracts and corresponding budget justifications were prepared, agreed upon and incorporated into a corresponding letter of collaboration when the grant was submitted. This section provides guiding principles for project managers at different stages in the subcontracting process.
Developing the Sub-contractual Budget Justification (for Inclusion in the Initial Application)
Project managers can provide support and technical assistance to the principal investigator and facilitate the budget justification by:
- Participating in planning meetings that address key proposal components as well as focusing on community relationships and collaborations.
- Providing recommendations regarding funding options for community involvement (consultancy, stipends/fees for meeting participation, subcontracts).
- Working with the principal investigator and the community agency collaborator to outline areas of responsibility and extent of involvement, and develop the related budget justification.
- Establishing contact with the business manager at the collaborating organization to verify salaries and confirm final figures (as required).
- Developing draft letters of cooperation for community partners that include intent to participate and subcontract terms, i.e. services to be performed and/or designated work for the agreed upon dollar amount.
- Ensuring that all required documents have been submitted (e.g., organization description, curriculum vitae of community co-investigators/collaborators, letters of collaboration, etc.).
- Disseminating full copies of the proposal to all collaborators, including community partners.
Facilitating the Sub-contractual Agreement (Post Award)
Once the notice of award has been received and the formal sub-contractual agreement is being entered, project managers play a critical role by:
- Assisting the principal investigator in transforming the budget justification into a work scope and plan for inclusion in the sub-contractual agreement.
- Circulating the proposed work plan to community partners for focused review and revision.
- Coordinating a meeting to revisit the proposed agreement prior to submitting the sub-contractual document. (While the dollar amounts may not change, the specifics regarding project activities may change as grants are being implemented almost a year after the grant proposal was submitted.)
- Verifying that community partners have participated in the required IRB training or have completed the Individual Investigator Assurance.
- Establishing realistic expectations by providing an orientation to the university procedures, time frames for processing paper work, etc. (Do not avoid this step even if the partners are not new.)
- Addressing and reaching an agreement regarding payment plan (e.g., advance funds, monthly reimbursement, quarterly, etc.).
- Monitoring/expediting sub-contractual signing.
Initiating a New Sub-Contract (once the Center programs are underway)
- Participating in the initial discussions regarding work scope and projected budget (arrange to have face-to-face meetings for individuals who are new partners).
- Identifying steps in the sub-contracting process with the university (focusing on general time frames).
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