What works for engaging lay stakeholders: Advice from a patient and caregiver group

To the Editor—Patients and family members are playing an increasingly active role as stakeholders in healthcare-associated infection (HAI) research. HAI researchers have engaged lay stakeholders to provide input on research agendas, ^{1, 2} educational interventions,³ and interpretation of data on patients’ experiences of hospital practices.⁴ Recommendations for effective patient engagement include gathering input on stakeholders’ experiences of engaging with researchers to help researchers evaluate and improve their engagement practices.⁵

For a recent 2-year project, our research team (Keating, Brys, Knobloch, Safdar) developed a patient and caregiver stakeholder (PCS) group of people who had personal experience with HAI. We met with the group 9 times to generate a stakeholder-driven HAI research agenda (details are described elsewhere).^{2, 6} At the end of the project, the 7 members of the PCS group participated in individual telephone interviews to talk about their experiences. Consultants with the Wisconsin Network for Research Support (Kaiser and Thomas), a patient and community engagement center based at the University of Wisconsin–Madison School of Nursing, conducted the interviews using a set of 13 questions (Table 1). Interview notes were imported into NVivo Pro version 11 software. WINRS consultants coded the interview data independently and met to compare and revise codes to achieve 100% agreement. Two primary themes emerged from content analysis: the value of participating in the PCS group and the meeting experience for members.

Table 1. Interview Questions for Patient and Caregiver Stakeholder (PCS) Group Members

The value of participating in the PCS group was expressed through 2 subthemes: making a meaningful contribution and influencing researcher and clinician attitudes through personal HAI stories. Members said that their work on the project could have a direct impact on patients in the future. One person said, “Saving one person from getting HAI means saving people’s lives.” Another said, “I want to proactively make sure that what I’ve been through doesn’t happen to anyone else.”

Group members described how sharing their stories helped researchers understand the patient experience. “[Researchers and providers] get a face to go with the clinical data. When people describe what is really involved, providers are amazed. It’s eye-opening!” Members described the atmosphere at meetings as friendly and conducive to frank conversation, and members felt comfortable sharing their stories, even when they met with an institutional stakeholder (IS) group of clinicians and infection control professionals involved in the project. Members talked enthusiastically about meetings with the IS group. As one PCS member said, “They were hungry for what we wanted to share with them.”

The second major theme in the interviews, the meeting experience for members, was expressed in 2 subthemes: limited orientation of group members and meeting content and processes. Few members remembered learning anything about the group’s purpose, the role of members, or details about structure and content of meetings. One member said, “I think it took me 2–3 meetings to understand what I was supposed to be doing.” Members offered suggestions for systematically preparing people to participate on an advisory board.

Members commented on several issues related to meeting content and processes. They thought that their joint meetings with the PI and IS group were valuable for developing the stakeholder-driven research agenda. Several suggested that joint meetings should have occurred earlier and more often. Most members said that the language used by the research team in meetings was appropriate for people who did not have a background in healthcare. However, one member noted that he sometimes looked for definitions of terms after meetings, and another said that the research team used too many acronyms. Members were concerned that people who participated in meetings remotely, or who did not use a computer and email, may not have had comparable opportunities to contribute. Finally, members wished that they had heard more about how the researchers would build on the project and whether they would involve the PCS group in future projects. “We did all this work—what’s going to happen now? It was not as clear as you would hope it would be.”

In summary, PCS members identified several elements of engagement that worked well in this project and several areas for improvement. The collegial atmosphere established by the research team helped members feel comfortable sharing their stories and perspectives. Members highly valued meetings that involved the PI and IS group, as these interactions offered an opportunity to see the direct impact of PCS contributions on the project. Based on member’s comments, we identified additional strategies that can help us enhance the experience of stakeholders on future projects.

1. 1. Conduct a structured orientation to prepare stakeholders.⁷ Content should address the project goal and intended outcomes; role of PCS group members and other stakeholders; and mutual expectations for stakeholders and the project team.

2. 2. Provide a comparable meeting experience for all stakeholders, regardless of differences in access to computers/smartphones or ability to participate in person. If members participate remotely, facilitators can use round-robin activities to ensure that all members have opportunities to contribute.

3. 3. Use plain language that everyone can understand during meetings, in materials, and in communications.

4. 4. Provide meaningful closure by explicitly discussing the research team’s plans for the future, including future involvement of the PCS group.

The results of this evaluation represent findings from one group of patient and caregiver stakeholders and are not generalizable to all HAI research that involves patient stakeholders. However, the strategies for effective engagement that emerged may provide a useful starting point for HAI researchers planning to involve patients and caregivers as advisors.