From: Patient participation in cancer network governance: a six-year case study
Real-world natural context → Moving from raw data to more theoretical description → Abstraction
Initial Cancer Program development includes people living with and beyond cancer (PLC) and caregivers. The Cancer Program emphasizes principles of patient-centred care (PCC) and services (document-MSSS 1998 Cancer Program)
Cancer Program promotes PCC
Mechanism 1. Consistent emphasis on patient-centred care as a network objective
“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).
PCC is integrated into the values of network actors
“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).[Committee members were discussing purchase of a $10 million linear accelerator, when…] “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).
PLC participation enables providers to understand what PCC means in particular contexts
Patients on local committees clearly saw how their experience of care enabled improvements to target patient needs and adjust the actions of various providers (PLC on local coordinating committees, focus groups).“The focus on patient experience forced us as a community to work on concerted action” (clinical manager, local level).
Providers are motivated to solve problems raised by PLC
The Cancer Directorate framework for PLC participation emphasizes co-creation and obligation for all local committees to include PLC. “Meeting the Cancer Directorate’s objective of patient- and family-centred care requires real partnership with PLC, notably through PLC participation on coordinating committees.“ (Document - MSSS 2017)
The Cancer Directorate mandates inclusion of PLC on national and local committees
Mechanism 2. Flexibility time and support to shape the mandate for PLC representation into meaningful participation
“No one can define the role. You attend and observe and eventually find your place. My experience has tipped the balance more than once” (PLC on local committee, from national PLC committee meeting)
Integrating PLC into committee deliberations requires learning on all sides
“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, national PLC committee meeting).
Strategies are developed to enable PLC and other committee members to work together on governance issues
A national PLC Committee is created and supported by the Ministry to bring together PLC from local committees, strengthen their voice and develop common tools. PLC wanted a “kind of super-PLC committee (so that we) can speak to the top levels, influence the top levels (PLC representation, national level)“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).
A protected space is established for collective reflection and confidence building among PLC, where they can develop supports and identify common priorities
“She (the PLC) makes us aware of issues, but as our local committee does not make resource allocation decisions, she is not involved in (that) decision-making (clinical manager, local level)“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).
Limited PLC influence on resource allocation and monitoring that are not the purview of local coordinating committees
“Patients are much better informed today and the system needs to reinforce their strengths and support their weaknesses” (clinical manager, local level).
PLC and providers construct projects to equip PLC to understand and use services more effectively
Mechanism 3. Recognition of the distinct knowledge of PLC in decision-making
The Cancer Program mandated development of care trajectories by tumour site, building on a lung cancer trajectory pilot project in 2014 (Cancer Plan, Cancer Directorate, 2017).“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).
Projects where PLC contribute unique knowledge heighten their role in governance