1 Background

Engaging patients and families in healthcare quality improvement (QI) is essential to meet the needs of those receiving care. Patient engagement can occur on a continuum from consultation to shared leadership [1] and has led to innovative outcomes for redesigning guidelines, systems and practices [2, 3]. Many patient/family partners (PFPs) have reported positive experiences, learning about the healthcare system, affirming their right to advocate and feeling like meaningful members of the team [4, 5]. However, there are challenges to PFP engagement, including uncertainty about best practices, discomfort in speaking up and lack of time, training and funding [2, 3, 6]. Despite attempts to engage PFPs, patients sometimes have little input and power in decision-making [7]. Even as patient engagement has become more common, there is still much to understand about the complexities of how to increase the likelihood of a positive, mutually beneficial experience.

The cystic fibrosis (CF) community has a rich history of patient engagement. PFPs have contributed to setting priorities [8, 9], developing research [10-15], creating guidelines [16-21] and QI [22]. Founded by parents of children with CF, the Cystic Fibrosis Foundation (CFF) has consistently prioritised the needs of patients and families [23]. CFF facilitates the Partnership Enhancement Program (PEP), a training programme on relationship-centred communication [24], and Community Voice, where individuals sign up to share their perspectives through various activities, including surveys, focus groups and committees [25, 26]. In 2017, findings from Community Voice highlighted the need to improve transitions of care for people with CF referred for lung transplant [20]. To address this, clinical guidelines and a national QI collaborative were developed, engaging PFPs to ensure the changes were responsive to the needs of the community [27, 28].

Within this context of a national QI collaborative developed in response to the needs of the community and supported by an organisation founded by parents of children with CF, we explored the experiences of PFPs who participate in QI teams. While patient engagement is a central value of the CFF and the QI collaborative, we wanted to understand the actions taken by local teams, the structures that support or inhibit patient engagement, and the opportunities for improvement, from the perspective of PFPs. To identify challenges and opportunities in engaging PFPs in QI work and to develop recommendations for best practices, we conducted focus groups with PFPs and gathered community feedback through member checking.

2 Methods

3 Results

4 Member Checking

After analysing the focus group transcripts, we received feedback from various stakeholders. At NACFC (2023), family members of people living with CF illuminated the issue of ‘cherry picking’ PFPs. They believed that the clinical teams made assumptions about who would be a good PFP, but did not consider others who would be interested. This topic was further explored through discussions with the team coaches, which highlighted how there was no standard process for PFP recruitment. The current practice of selecting individuals to invite also brought up concerns about diversity, equity and inclusion of those chosen to participate. The overarching suggestion from these discussions was that there should be a more inclusive process for recruiting PFPs, perhaps where individuals apply to join the team. At the CF LTT RDN National Summit (2023), some multidisciplinary team members shared challenges at their institutions for engaging PFPs, including the need for volunteer training, paperwork and other administrative policy barriers (including those related to compensation).

Sharing the results of the focus groups with additional PFPs highlighted the need to customise the PFP role. While most of the focus group participants liked the ideas of less frequent involvement, during the member checking process, other PFPs stated that they enjoyed being engaged in all aspects of the QI work, regardless of whether the tasks were patient-facing or internal to the clinical teams. During the focus group, one participant talked about how they were familiar with QI tools from their professional career and were able to participate in more of the technical aspects of improvement. During the member checking process, team coaches shared stories of other patients who had advanced skills in Microsoft Excel and developed a tracking tool. Other PFPs organised and presented at sessions at the CF LTT RDN National Summits. However, others preferred to only attend meetings. This diversity of experiences highlights the need for flexibility for PFPs to participate in ways that align with their wants, needs, abilities and availability.

Additional discussions with the CF LTT RDN community clarified challenges related to compensation and expectation setting. While there was widespread agreement on the importance of fairly compensating PFPs for their contributions, participants also recognised the complexity of this issue. For some PFPs, receiving financial compensation could jeopardise their eligibility for disability benefits. This highlights the need for careful consideration and flexible compensation models to ensure inclusivity and avoid unintended consequences.

5 Response to Findings

Given what we learned from the focus groups and member checking, we developed resources to guide QI teams in patient engagement. We first collected resources from the Cystic Fibrosis Learning Network (CFLN) [22], Cystic Fibrosis Success with Therapies Research Consortium [34] and Cystic Fibrosis BreatheCon Planning Committee [35]. From these tools and our research findings, we created the Patient and Family Partner Engagement Guide, which includes seven key documents (Table 2; Appendix C). We also compiled resources for PFPs, including Microsystems at a Glance [36], Electronic QI Modules, Improvement Workbooks, Quality by Design [31] and other resources available at clinicalmicrosystem.org. In response to the concerns about compensation, the CFF is developing a policy and accompanying guidelines to help CFF staff implement the PFP compensation policy in a consistent way.

Based on the findings, we propose six best practices for QI teams looking to engage PFPs (Figure 1).

6 Discussion

Listening to the voices of PFPs, we learned that they were motivated to contribute to QI teams because they felt deeply connected to their care teams and wanted to help others, felt appreciated by their teams and supported by the team coach, and experienced challenges regarding the timing of meetings, lack of compensation, hearing difficult information and gaps in expectation setting. Conversations with additional PFPs, clinicians and team coaches revealed the importance of developing equitable recruitment processes that honour the diverse expertise in the community and the need to customise the QI experience to the skills, capacity and preferences of the individual participants.

Many of our findings align with what others have reported about the benefits and challenges of engaging PFPs in healthcare improvement. Similar to Godfrey et al., we found that patients and caregivers want to know what is expected of them, including time commitment [37]. Others have also reported challenges with the timing of QI meetings [5, 38]. Based on their experience engaging PFPs in QI, the CFLN has created best practices, including establishing clinician readiness, facilitating an inclusive PFP recruitment process, supporting multiple PFPs on each team, providing QI training, selecting projects that reflect PFP priorities, facilitating access to information, encouraging an inclusive and safe involvement, compensation, and disseminating work in open-access venues [39]. Our focus group study identified many of the same best practices, in addition to the PFP perspective that it can be difficult to participate in discussions of sensitive information and that it is important to tailor the role to the individual. These findings contribute to the growing literature on the importance of including the beneficiaries of care in QI interventions to enhance the relevance and outcomes of QI interventions [40].

A key finding from our study is the critical importance of personalising the QI experience for each PFP. This means recognising and accommodating their individual preferences, needs and abilities to create meaningful and valuable engagement. By prioritising this personalised approach, we can empower PFPs to contribute effectively and derive greater satisfaction from their involvement in QI efforts. This flexibility is also reflected in the CFF Community Voice programme, which offers opportunities ranging from membership on committees to responding to surveys and providing feedback on draft materials [16, 25, 41]. To optimise collaboration, teams should carefully determine the most appropriate level of engagement, considering the specific needs of the project, clinical team and PFP [1, 7, 42-44]. In our study, we found that the team coach played a crucial role in helping teams work with PFPs in a way that was individualised and mutually beneficial.

Our research highlights a critical need for a more inclusive PFP recruitment process. Participants expressed the importance of seeking out and welcoming diverse perspectives and ensuring a broad range of voices are included. Furthermore, the current structure of QI, with meetings held during traditional work hours and a lack of compensation for PFPs, creates significant barriers to inclusivity. This can inadvertently exclude those who could benefit most from QI, particularly individuals with caregiving responsibilities or limited flexibility, or those facing financial constraints [43]. Beyond inequities in who participates, there is an inherent power imbalance in patients being invited by the clinicians who hold the power, which has led to criticisms of exclusivity and tokenism [45, 46]. There have been calls to move away from traditional models that narrowly focus on feedback to models that empower PFPs through equal and reciprocal relationships [43]. The CFF has recommended avoiding tokenism by ensuring there is more than one PFP on the team, engaging them throughout the duration of the project and creating a team environment that builds trust [41].

The participants in this study discussed issues of compensation for PFPs, which is a common issue across healthcare. Other PFPs have described the importance of compensation in addressing equity and power imbalances, acknowledging differences in motivation, respecting vulnerability, demonstrating commitment and removing barriers to engagement [47]. Recommendations exist for financial and non-financial compensation [47-49]. Researchers and QI leaders searching for best practices on PFP compensation can look to a recent review of guidance documents [48]. All the reviewed documents recommended offering non-financial compensation (e.g., training opportunities) and 95% recommended offering financial compensation, including honoraria, gift cards, salary and stipends, with the recommended amount ranging from $12 to $50 per hour.

While many of our findings echo what others have reported about the benefits and challenges of engaging PFPs in QI, we also found some key differences. The structure of the CF LTT RDN, use of effective meeting skills and support from the team coach likely mitigated some of the challenges reported by others such as unorganised meetings, little follow-up, lack of understanding of the healthcare organisation, frustration with the slow decision-making process, availability of sufficient resources and communication skills of the QI team [5, 38]. The collaborative environment likely supported prerequisites for positive PFP involvement, including a focus on relationships and communication, training in QI principles, shared power and leadership, non-hierarchical, multidisciplinary collaboration, and mutual recognition and respect [6, 50].

7 Limitations

These findings should be interpreted considering several limitations. First, only five PFPs participated in the focus groups. PFPs who were less engaged or had negative experiences might have been less likely to respond to the request, thus leading to positivity bias. Second, PFPs were selected by their healthcare teams and might not represent the diverse experience of those living with CF. Third, a common limitation of focus groups is the tendency for socially acceptable opinions to emerge and for dissenting opinions to be withheld [51]. To mitigate this limitation, the trained moderators actively sought input from all participants and created space for dissenting opinions. Fourth, the involvement of CF LTT RDN team coaches and leaders in the interactive research model may have biased the interpretation of the results, given their vested interest in the success of the programme. However, the hybrid practitioner-research members did not shy away from critiques (e.g., the perception of unfair compensation), suggesting a genuine commitment to learning and improvement [33].

8 Future Directions

Future research is needed to explore the broader experience of patient/family involvement in QI and test the recommendations we proposed. First, given our limited sample, additional work could explore a broader and more diverse sample, perhaps capturing the experiences of patients and family members who are less often engaged in QI and research. Second, mixed-methods evaluations could be conducted to assess interventions based on the recommendations of this study, including (1) more equitable recruitment processes, (2) compensation models for PFPs and (3) implementation and effectiveness of the included Patient and Family Partner Engagement Guide.

9 Conclusion

The structure of the national QI collaborative, the use of effective meeting skills and the support of a team coach facilitated an environment of trust and mutual respect that leveraged the strengths of PFPs. Even within the context of a QI collaborative created by the direct influence of patients and family members, there is still a need to attend to ongoing processes and practices and embed these processes into local QI teams. PFPs highlighted the need to improve recruitment, compensation and resources available to QI teams and PFPs. While at times it might feel time-consuming, messy or intimidating to include patients and families as true partners in improvement efforts, from our experience, the rewards far outweigh the challenges.

Author Contributions

Cassandra B. Iroz: conceptualisation, methodology, data curation, formal analysis, investigation, writing – original draft, writing – review and editing, validation, project administration, visualisation. Marjorie M. Godfrey: conceptualisation, methodology, investigation, validation, funding acquisition, writing – original draft, writing – review and editing, project administration, formal analysis, supervision, resources, data curation. Coua Early: conceptualisation, data curation, investigation, writing – review and editing, validation, project administration, resources. Brad Dell: writing – review and editing, validation, investigation, resources. Abigail Boyle: writing – review and editing, validation, resources, funding acquisition. Erin Tallarico: writing – review and editing, validation, resources, funding acquisition. Julie E. Reed: writing – review and editing, conceptualisation, methodology, data curation, formal analysis, validation, investigation, resources. Julie K. Johnson: supervision, writing – review and editing, writing – original draft, visualisation, validation, methodology, conceptualisation, investigation, formal analysis, data curation, resources.

Ethics Statement

This study was approved by the University System of New Hampshire Institutional Review Board (UNH-IRB-FY2021-60).

Consent

All participants provided electronic written consent.

Conflicts of Interest

Two of the co-authors (E.T. and A.B.) are employees at CFF, and the rest of the co-authors have received compensation from CFF for their roles as researchers in the CFF LTT RDN. None of the authors has any additional conflicts of interest relevant to the submitted article.