We received 18 referrals for the PAC from cancer care center patient navigators, oncology providers, and the cancer support group director. One of the referrals was from another applicant interested in joining the PAC. Of the 18 referrals, nine individuals were reached and seven applications were completed. Interviews were conducted in English (and Spanish as needed) and lasted between 15 and 20 min on average. All interviewed applicants were offered membership to the PAC. Demographics of the PAC included 5 females and 2 males, 4 identified as Black, 1 as Cape Verdean, 1 as Latinx and 1 as White. All members were proficient in English except one who exclusively spoke in Spanish. No PAC members had prior research experience. Two members reported experience with advocacy work outside of healthcare.
One applicant declined membership, concluding that participating would not be feasible with her treatment schedule and transportation needs, despite the research team’s efforts to facilitate transportation support. An additional member ultimately decided not to participate after attending one meeting, citing her caregiving responsibilities as an obstacle. PAC membership fluctuated over the course of the project, due to changes in PAC members’ availability—these challenges with recruitment and retainment are discussed below under Lessons Learned.
Capacity building, goal setting, and action plan
We draw on charrette planning, a data driven iterative planning process in which one session informs the next, to engage the PAC in strategic planning for a patient powered research agenda . PAC members engaged in critical discussions during monthly meetings integrating acquired knowledge from their research training with their own experience and/or perspective on racial inequities in cancer research to develop a strategic plan. The charrette planning process occurred for approximately 8 h over the span of 6 monthly meetings. Additionally, training resources from the Community Tool Box (an online curriculum) were used to support the PAC in developing their vision, mission, and strategic plan . We used Tuckman’s four stages of small-group development: forming, storming, norming, performing and action planning  to describe and evaluate the process of establishing the PAC and their activities.
In the initial stage forming, group members’ central focus is orientation to the general purpose of the group and to each other . PAC members described their own understanding of research processes in initial baseline interviews, which helped the research team further delineate existing strengths and areas for capacity building. The first two group meetings focused on orienting the PAC members to the purpose of the group and introducing them to the core concepts that would inform their decision-making on priority research questions. Orientation also included “icebreaker” and storytelling activities to build group cohesion and facilitate active engagement. Research team members introduced PAC members to the principles of patient engagement in research and CBPR, and provided essential background information on the cancer center and cancer care services at the hospital [16, 24]. We engaged PAC members in discussions on racial inequities in cancer care and cancer clinical trials participation.
Initial trainings involved a series of interactive presentations and group discussions. For instance, in the first meeting, the first author presented themes from a hospital-based study examining attitudes towards participating in clinical research among Black patients, and research team members facilitated a group discussion in response to the presented data. PAC members responded to several key themes around reticence to participate in medical research—such as “not wanting to feel like a guinea pig”—indicating the presence of similar concerns in their family networks or communities . This sparked discussion of PAC members’ own positive and negative experiences as patients and caregivers. Additional training and capacity building activities within the first several meetings included a two-hour training session on research methods and ethics, and meeting with another hospital-based patient advisory group grounded in a CBPR approach. After the first and second meetings, a graduate assistant called PAC members individually to gather feedback. PAC members indicated enjoying getting to know each other through icebreaker activities, with a few expressing excitement at this opportunity to “give back” to other cancer patients and survivors. One PAC member described experiencing an “aha moment” during a presentation and discussion around racial health disparities, and members enjoyed hearing about another patient advisory council’s work. Collectively, feedback indicated that PAC members were developing a deepening understanding of the purpose of the PAC formation and the potential impact of patient advisory councils.
In storming, group members begin to establish mutual trust and become more comfortable voicing opinions, which may result in conflicts as group members learn how to work with each other . PAC members began with varying levels of familiarity with cancer health disparities and how these disparities relate to clinical trials. As the PAC members became oriented to the core concepts relevant to the project over the course of the first two meetings, the focus in subsequent meetings shifted to engaging PAC members in active learning activities to prompt discussion and build knowledge. The research team used several strategies to facilitate learning and spark discussion on cancer health disparities and clinical trials, including discussion prompts such as word association activities, as well as the presentation of additional research studies and discussion of relevant topics in the media (such as an NPR article on racial disparities in clinical trials . These learning opportunities prompted members to further reflect on their own experiences as patients and caregivers. For instance, the research team members asked PAC members to respond to the question: what do you think of when you think of clinical trials? A research team member listed PAC members responses out on poster board—a strategy used throughout the project to encourage brainstorming and create a shared visual record of the discussion in real time. This prompt led to a range of responses from PAC members—such as “a study for beneficial outcomes,” “is this the best way to spend my time?,” “Mad scientist,” “What is the impact going to be on my body?,” and “can I get out of this once I start?” Reflecting on their initial responses, PAC members began to share their initial thoughts and perspectives on barriers to cancer care and/or clinical trials, focusing primarily on a lack of trust in the medical system, within the Black community.
In this stage of group development, the authors continued to allocate a significant portion of each meeting to icebreaker activities designed to build group cohesion and mutual trust. The majority of the third and fourth PAC meetings focused on storytelling activities, with the research team members sharing their motivations for engaging in this research, carefully but intentionally touching on personal or family experiences of cancer, as well as professional experiences. PAC members shared their stories as cancer survivors or caregivers, and this process of mutual storytelling created a sense of shared experience and purpose. These team-building storytelling activities led to PAC members beginning to speak more openly with the academic-community researchers and each other, indicating an increasing sense of mutual trust and respect. In initial meetings, for instance, academic-community researchers noted that PAC members seemed reluctant to share perspectives or experiences that could be perceived as negative. By the fifth PAC meeting, about two months after the first meeting, they began to share a range of positive and negative experiences navigating healthcare systems, to ask pointed questions about the goals of the group, and to challenge each other to think critically.
As the group progresses to norming they have learned to function as a more cohesive unit invested in establishing their mutual goals . In this stage, individual PAC members began to take greater leadership in facilitating meetings and action planning. This began gradually, with one PAC member, for instance, taking the lead in facilitating icebreaker activities, starting in the sixth meeting. Over the course of the first five meetings (about two months), PAC members had developed a working relationship with one another, and with academic-community research members, allowing them to begin the process of identifying and setting group goals. During meetings six through 11, spanning approximately four months, the PAC engaged in the process of developing a vision and mission and began identifying potential action steps for the PAC, using the VMOSA (vision, mission, objectives, strategies, action plan) model, a practical strategic planning tool . A member from the academic research team presented on organizational visions and missions as key aspects of strategic planning, engaging the PAC members in evaluating different examples of visions and missions from healthcare and nonprofit organizations. The group spent several meetings brainstorming and unpacking individual members’ ideas, values and concerns relevant to the project’s core foci, which academic research members wrote out on poster board to create a shared visual record and facilitate further brainstorming. The group then worked together to identify shared or overlapping priorities, which involved significant back and forth between members. Academic research members and PAC members identified several recurring themes from the brainstorming sessions and PAC members’ discussions over the course of the group’s development. Themes included: the importance of community outreach and support; bolstering patient advocacy; improving patient-provider relationships, with a focus on trust, continuity and accountability; the significance of storytelling; and the need for a marketing “rebranding” of clinical trials. From these themes, the group worked to generate shared language to represent selected themes within a vision and mission. After several iterations, the PAC generated a vision:—“Empowered patients in relationship with empathetic providers” and mission: “Advocating for patients to be in charge of their cancer care, supported by their doctor” that they felt best represented their priorities and goals as a group.
In the final stage, performing, the group has established norms and identified each member’s role, and individual members take active roles in decision-making and planning . Indicative of the final stage of group development, the PAC members now take active, leadership roles in group decision-making and action planning. Having developed a sense of group cohesion, working relationships based on trust and a shared vision and mission over the course of the last seven months,by the 12th meeting the group was able to focus solely on how to best advance their vision. PAC members voiced readiness to plan activities to move towards their group goals, and the research team supported this process by providing prompts to move the discussion forward. The PAC reviewed and considered their collective knowledge at this juncture, evaluating what they knew based on their personal, family and community experiences versus what remained unknown and of interest to them. Members reflected on the various strategies and ideas for action steps that had arisen during the process of developing a vision and mission, and concluded that the patient-provider relationship within cancer care had emerged as their primary area of shared interest. A few members expressed that without a trust-based patient-provider relationship, patient engagement in clinical trials was unlikely. The group decided that assessing other patients’ experiences with cancer care should be their first priority, and decided to develop and launch a patient assessment focused on patient and caregiver relationships with oncology and primary care providers. Over the course of the next year, the PAC members developed and conducted a patient assessment at the Cancer Care Center and analyzed the resulting data,with assistance from the academic research members. The results of this assessment and further details on this PAC-led process will be shared in a forthcoming paper, in collaboration with several PAC members.