In line with the specific study objectives, findings across local and national levels highlight three main mechanisms as especially important to enabling PLC participation in network governance functions: emphasis on patient-centred care as a network objective, shaping opportunities for efforts to strengthen PLC contributions within prescribed spaces, and recognition of the distinct knowledge of PLC in decision-making processes. Conditions enabling the activation of these mechanisms to influence governance functions relate primarily to network structure. The MSSS as lead organisation encourages a distributed and collective approach to some, but not all, governance functions. Resource allocation and monitoring functions are held centrally, beyond reach of the spaces established for PLC participation. Certain paradoxes emerge between mechanisms for PLC participation and network structure.
Mechanism 1) Emphasis on patient-centred care as a network objective
Quebec's national cancer plan (11) clearly expresses patient-centred care (PCC) as a core value, and the spread of this value is evident in the policies that structure the network at various levels. PCC appears, among study participants at national and local level, as a convergence point coherent with both the clinician's duty to respond to the individual needs of PLC and the organisation's mandate to ensure responsiveness to whole person needs.
“We used to speak of continuous improvement in administrative terms to clinicians and that did not get through to them, not at all. Then we changed our discourse, saying: “What we all want is to improve services for the patient, to respond to patient needs, at the right time, for the right person.” When we talk that way, we reach everyone” (manager, local level).
The emphasis on PCC facilitated acceptance of PLC participation to guide decision-making within the network. Some informants noted a shift in organisational culture and discourse that promoted collaboration and helped defuse conflict around where services should be located and the roles of different providers.
"The focus on patient experience forced us as a community to work on concerted action" (clinical manager, local level).
"When a PLC is at the table, committee decisions are made in terms of access to quality care. If the PLC is not there, debate can get caught up in concerns such as the status of the establishment or making things easier for providers" (clinical manager, national level).
On committees, PLC embodied the idea of PCC as well as clarifying what it meant in particular contexts, thereby participating in the governance function of shaping network vision. PLC input emphasized a broader view of cancer care that includes the survivorship course, primary care and community support services, moving from a perspective of "conquering cancer" to "living with and beyond cancer" as a chronic disease. It also widened the spectrum of relevant services and "reveal[s] gaps between patient and provider perceptions of what constitutes good care" (clinician manager, local level). With respect to wait times, for example:
"We considered that 'Well, we meet the [Ministry's] three-month target', but the PLC reminded us that waiting times for cancer diagnosis and treatments were excessively anxious. So we have met our medical imaging team. We have been working to further reduce delays to ultrasound for suspected breast cancer (clinician manager, local level).
When providers saw that something within their control was better for patientsthey were often motivated to solve the problem promptly.
"What we did – and this was agreed by the whole executive committee – was to ensure that for clients who now had go to another location for care, we would cover transportation. This was concretised by providing taxi coupons" (clinician manager, local level).
To improve access to community support services, one local committee worked to integrate a referencing tool to 20 community services in the organisation's electronic record system.
"These include transportation, psychological support, healthy lifestyles, maintenance of physical capacities, caregiver support, and more" (manager, local level).
Informants recognised that providers and patients struggled to address multiple wide-ranging priorities around what was needed to optimize the cancer trajectory. For example, as clinicians on one local committee discussed investment in a $10 million linear accelerator:
"The PLC said 'after I was discharged home, I would have liked to be able to call the nurse.' That brought everyone back down to earth" (manager, local level).
Many clinicians and managers expressed that PLC need to be present on committees to raise issues that would otherwise go unnoticed: "if something is not named, it's as though it doesn't exist" on the agenda of decision-makers (clinician manager, local level). PLC participation "served as an important lever to put actions in place" (clinician manager, local level) and "forced providers to rethink their positions" (clinician, local level) when these diverged from PLC perspectives.
Mechanism 2) Shaping opportunities to translate mandated PLC representation into meaningful participation
There was no preconceived way of working with PLC in network governance structures: "we're learning how to swim once we're in the water" (policymaker, national level). The Cancer Directorate framework mandated that PLC be invited onto local committees, but provided little guidance around modalities or the roles and responsibilities PLC would assume. The Cancer Directorate and national committee looked to PLC for advice on how to shape these opportunities for PLC participation:
[I was] asked: “Would you and another PLC come with us to give the patients’ viewpoint and help formalise the various committees where patient representatives will have a presence and fulfil the responsibilities we expect of them?” (PLC, national level).
Integrating PLC input into deliberations required learning on all sides. Some PLC had difficulty raising problems, felt their input was discounted, notably by physicians, who "felt they knew what was best" [PLC, national level]) or that there was little place for PLC contributions on the issues discussed. There were also difficulties recruiting PLC on some local committees. Certain PLC informants highlighted that committees were sometimes ill prepared to integrate them.
"When I attended the first local cancer committee meeting, I was the first to arrive and sat a one end of the table. When the others arrived, they sat at the other extremity, never asked me who I was and did not explain my role. At the end of the meeting I felt very alone and asked myself what I was doing there" (PLC, national committee).
Others considered the meetings were structured to make room for their specific contributions.
"I got an extraordinary welcome. 'So (they would ask), what do you think?' They gave me feedback on what I said. They informed me about follow-up. My name is on the agenda. The vocabulary was difficult at first but now it's fine" (PLC, local level).
PLC participation in local governance committees was enhanced by the establishment, part way through our study period, of a national PLC committee. It functioned as a community of practice, with representatives from each local network committee and the national committee. The idea came from a PLC on the National Coordinating Committee, who saw the need to provide a protected space where PLC could collectively reflect on issues arising within their respective committees. The Cancer Directorate confirmed the community of practice's official mandate as to promote communication and sharing of knowledge and experience in order to contribute to improving cancer care and services. It was also made responsible for developing supports for PLC on governance committees, and for providing input as requested into National Cancer Committee documents (29). Meeting two to three times per year, members pooled their experience of cancer care and ideas for improvement, and addressed challenges around participation in local committees, including the uneven reimbursement of expenses, the need for preparation, and discouragement among some PLC participants due to lack of feedback and progress on issues they raised.
PLC reported that they were better able to contribute to local committees as a result of their participation in this community of practice, a perception that was shared by clinical managers on local committees.
"What they (the PLC members on our committee) were saying was listened to because it resonated with what we were hearing from the national PLC committee" (clinical manager, local level).
Overall, the national PLC committee increased the confidence and skills of PLC participants, heightened their legitimacy at local level, and provided a national hub to work on common PLC priorities. The PLC community of practice identified physicians’ skills in "breaking bad news" as a first shared priority, and a training program for physicians was developed for province-wide implementation. Providers on local committees regarded PLC reports of discussions they had in the community of practice as "a precious source of information about how care is experienced in the regions" (clinical manager, local level) that complemented professional perspectives.
One PLC described the network committees as a "mountainchain", providing a route for issues arising locally to make their way up to national level: "That makes it more difficult to pretend that everything is working well when in fact it isn't" (PTC, local level).
While national and local coordinating committees and the national PLC committee provide opportunities for participation, they live within a network where decision-making is perceived as highly centralized around the Cancer Care Directorate. A number of informants expressed a lack of mutual listening between committees and the Directorate, which "solicits input from the various committees, but does not act on their recommendations" (clinical manager, local level).
This central role enables the Directorate to embed PLC participation within network governance committees. However, it also appears to delimit PLC influence within the network and impede PLC participation in governance functions of resource distribution and monitoring of performance, which remain at Ministry level where opportunities for PLC participation are lacking.
As committees are not involved in resource allocation decisions, PLC have no opportunity to influence this governance function.
"She [the PLC]) makes us aware of issues, but as our local committee does not make resource allocation decisions, she is not involved in decision-making" (clinical manager, local level).
The central level also retains the role of defining and monitoring performance indicators in the network.
“We want to deploy the information system in cancer in order to perform a follow-up in real time, and to be proactive. We are working with finance, the archivists and others to develop a dashboard. It is up to us to develop this dashboard” (policymaker, national level).
PLC do not yet have access to these data, something regarded as an impediment to participating in governance.
“We don’t have access to the network operational statistics and we need to if we want to fully contribute to analysis of what is done and suggest solutions that make sense” (PLC, national level).
Mechanism 3) Recognizing PLC knowledge in decision-making
PLC and provider informants at local level recognize that a collaborative approach is needed for PLC to be comfortable sharing their knowledge within committee discussions and for clinicians and managers to accept PLC input as valuable and constructive.
“Getting engaged within the organisation (…) to try to make things move positively, calmly, while being aware of constraints. Working with, not confronting. Trying to use constraints as levers [for improvement]...” (PLC, local level).
PLC participation in decision-making was seen to help defuse conflict among providers on certain issues, enabling a better management of relationships between network actors: providers were less willing and able to defend their interests when these were misaligned with needs expressed by the PLC. Oftentimes, such discussions led to new understanding of what patient-centred quality care entailed.
"Often, when we talk about the hierarchy of service, doctors will say "But patients don't want to travel far. If we tell them they have to go to (City 1) for their surgery, they'll refuse". True, there are some who don't want to make the trip, but there are others who say 'If the best treatment is in Italy, I'll go there and for me that's no problem" (policymaker, national level).
A number of initiatives where PLC were most active revolved around improving people's ability to use services effectively. On local committees, PLC raised concrete issues they faced in meeting their needs. They also co-led a number of projects that served to improve patient ability to understand and negotiate both their cancer treatment and the system. In one local network, PLC and clinicians designed and provided group information sessions for patients starting treatment to help them understand the process, anticipate problems and know how to respond, a best practice then shared within the national PLC committee. Similar sessions for patients coming to the end of treatment were also under development:
"Patients are much better informed today and the system needs to reinforce their strengths and support their weaknesses" (clinical manager, local level).
Within local networks, work to design tumour-site-specific trajectories increased reliance on PLC experience, thereby enhancing their influence on the governance function of knowledge management. Trajectory design involves understanding, from the patient's perspective, all steps from investigation of a suspicious lesion to life beyond active treatment in order to coordinate among providers, set priorities and develop solutions. Indeed, only PLC have the entire vision of the trajectory. In this exercise, PLC were seen to have essential knowledge that clinicians, managers and administrators needed to work out collaborative relationships and eliminate barriers between services. Local networks employed a variety of strategies to work with PLC in trajectory design. In one, PLC members of local committees worked with staff to design surveys and conduct small group workshops of people with the specific cancer in question to clarify the current situation, and gain insight into barriers and how these might be eliminated. A large number of PLC were involved in the process,
"...which is very demanding for the people involved... but will ensure we're moving in the right direction given our local reality" (clinical manager, local level).
The PLC involved found it rewarding to both put their committee experience with clinicians and managers to work to engage other PLC, and apply their knowledge and insight to improve future patient experience.
"Mapping patient experience along a trajectory revealed gaps between the reality perceived by providers and that lived by patients. These contradictions encouraged providers to re-examine processes and priorities for improvement, and local context assumed greater importance. It also became evident that PLC participation needed to extend beyond hospitals to cover other steps in the care trajectory (clinical manager, local level).