Engaging Patient and Family Advisors in Health-Care System Planning: Experiences and Recommendations

Feeling valued and included as an equal

Prior to their engagement in OCP IV development, most PFAs feared experiencing “tokenism.” This fear echoes a finding in the literature regarding the risk of using patient participation to endorse an initiative rather than to meaningfully engage in a substantive manner (5). In this case, PFAs reported that these fears quickly dissipated. Most PFAs described feeling like an equal team member and described the staff as being inclusive, minimizing power differences. Participants described feeling valued because they were asked meaningful questions, which they believed demonstrated that their contributions were seen as important and taken seriously by other team members. Several participants also mentioned senior executives (eg, vice presidents) and clinicians reaching out to them to convey recognition or to check in to see how they felt about the process. In describing what made her feel valued, Karen commented, “It is just how your presence at the table is perceived and whether the people at the table who are not patients or family members have bought into you being an integral part of the process.”

Specific behaviors that made PFAs feel valued and respected included: being directly called on for input, being listened to, being kept informed, “being considered every step of the way” (Sharon), and having the staff explain decision-making (ie, specifically making an effort to describe what decisions were made and why). These findings are consistent with previous reports of how patients were effectively engaged on an advisory committee (6).

Supportive interpersonal relationships

One benefit of engagement is the opportunity to form new relationships (6). In this case, building relationships was important to many PFAs who had hoped to meet like-minded people through their role. Patient and family advisors reported these relationships made them feel comfortable, welcomed, and integrated into an environment where people shared their desire to improve the cancer system. Participants also appreciated working in a diverse team and the opportunity to learn from the other individuals at the table. As Paula shared, “I liked interacting with the different players at the table, whether they were clinicians or CCO staff or nurses or other PFAs…It was interesting to hear the perspectives at this one little table.” Many participants believed that the learning was reciprocal, as Sharon stated, “I learned a lot from them and they learned from me.”

Clarity and transparency

As reported elsewhere (13), participants involved with the OCP IV described open, clear, and transparent communication as contributing to their positive experience of engagement. Information was regularly shared with PFAs before and after meetings. All participants felt they were given material with enough time to review and had the opportunity to clarify information. One participant expressed “If we are not prepared it is pretty much our own fault because we’ve had everything given to us” (Carol). This is in keeping with a previous observation in the literature that educational opportunities and reference material empower patients to be collaborators (14). Sharing information before meetings made it easier for participants to contribute as they understood what the objective of the meeting was and what was expected of them; this sense of understanding has also been noted in other reports as a key aspect of effective engagement (3).

Premeeting orientations and debriefing meetings were also appreciated by PFAs. When the premeeting orientations shared context and background information that went beyond the information shared in the materials circulated via e-mail, the meeting was perceived as being “crucial.” However, at times premeeting orientations were a “reading of the slide deck,” which was less useful. One participant recommended making these meetings optional or asking PFAs what questions they would like addressed in advance of the meeting.

Participants provided a few examples of when communication was not effective, where they did not feel considered, or they “fell through the cracks.” These examples included instances where e-mails were not responded to, where there was confusion regarding engagement specifics, and where there was a lack of logistical support. Patient and family advisors noted that while they were members of the working group, they were not employees and therefore did not have access to the same tools, infrastructure, and resources as staff. For example, when meetings were canceled or rescheduled, extra effort needed to be made to ensure PFAs received the notification. Additionally, if PFAs required assistance with meeting logistics, effort was needed to coordinate with internal stakeholders to ensure PFAs’ full participation (eg, setting up a teleconference line).

Shared language and understanding

Shared language and understanding is needed to facilitate engagement (3). In the current study, one language barrier was an overall reliance on acronyms. Although participants reported that CCO staff made an effort not to use acronyms at the first meeting of the various working groups and committees, many PFAs developed their own acronym dictionaries or relied on one that was provided to them. Premeeting orientations and debriefing meetings were also useful for clarifying language and acronyms.

Additionally, PFAs reported that there were times it felt as though they and CCO staff were ascribing different meanings to the same words. It became important for groups to work together to clarify the meaning of words and concepts that were used. Over time, a shared language and understanding was developed and clarified through ongoing discussion. Some participants reported that they believed including patient and family perspectives served to humanize administrative, clinical, and systematic language used by CCO and that made the OCP IV more accessible to a broader audience.

Feeling heard

One of the most successful engagement tactics identified by participants was directly calling on PFAs to share their perspectives during meetings.

It seemed to me that the OCP IV table was equal from the beginning, there was no question. If I, or the other PFA hadn’t spoken in a while, somebody would say “What do you think?” or “How does this look to you” and then we could voice what we had been thinking about. (Karen)

The PFAs also felt heard as a result of the staff’s responsiveness to PFAs’ contributions. Following up with PFAs to let them know how and why their feedback was or was not incorporated and keeping PFAs informed of work taking place outside of the meetings led to an increased sense of rapport with staff and left participants feeling like integral team members.

Teleconferencing

All participants preferred face-to-face meetings over teleconferencing, although they recognized the resource constraints that made it impossible for all meetings to be held in person. Teleconferencing challenges described by participants included a lack of their own technological skills, lack of equipment, and the limitations imposed by not being able to read someone’s facial expressions and body language. This finding needs to be weighed against other observations from the literature that suggest the ability to attend meetings virtually increases participation, particularly among those who are in remote locations (6).

Patient family advisors as leaders

Patient and family advisors bring to the engagement not only their experience with health care but also their own skills and expertise. These attributes contribute to a sense of leadership that can facilitate productive engagement (7,15). Many participants in the OCP IV development felt they were able to draw upon relevant professional/volunteer experience in addition to their personal experience with cancer and the health-care system. Most participants felt that participating in the development of the OCP IV allowed them to use and develop their skills, while contributing to making positive change and drawing from their first-hand experience.

All participants described engaging in the development of the OCP IV as a steep learning curve. Many participants took the initiative to develop the background knowledge they felt they would need in order to fully participate. Given this learning curve, most participants recommended that the PFA orientation be more comprehensive when engaging PFAs in future planning efforts, such as the OCP V.

Leadership of CCO staff

Generally, participants gave positive feedback about the leadership skills of CCO staff. Staff were described as being “on top of things,” transparent and providing substantial clarity in procedures, roles, goals, timelines, responsibilities, and expectations. Staff members were also seen as strong facilitators. Participants appreciated introductions at the beginning of meetings, felt that meetings were well chaired, and noted that agendas were well organized with appropriate time allotted for each item. These attributes made for more productive meetings and increased participants’ sense of preparedness as they knew what was expected of them, at what time, and why.