Table 1 Involvement of patients and their next of kin at the RCCs

Patient- and Family Advisory Councils (PFACs)

All six RCCs have a council for patients and their next of kin (referred to as PFACs in this article, Patient- och närståenderåd in Swedish). Participants must have experience with cancer themselves or as next of kin, and they are reimbursed for their time.

The PFACs’ task is to monitor the perspective of patients and their next of kin in cancer care and the work carried out by the RCC. The intention is that the PFACs contribute to the development of cancer care, in particular to meet the needs of patients and their next of kin during the care process.

The RCCs’ PFACs should focus on general issues that concern the group of patients and their next of kin, not diagnosis-specific issues or issues specific to individual patients. Furthermore, the PFACs have an advisory role in the RCC, and the participants should monitor and identify areas of improvement and present these to the RCC leadership and give feedback on proposals.

The organisation and mode of operation of the RCCs’ six PFACs differ. According to a regional assignment description for the investigated PFAC, the PFAC members assign a chairperson and a vice chairperson amongst themselves. The chairperson is included in the RCC board, but has no decisional authority. The RCC supports the group by contributing with a coordinator, an RCC employee, who assists with administrative tasks such as taking minutes and distributing information in between meetings. The RCC operational manager participate at the PFAC meetings.

Care process groups

There are 15–30 care process groups at each RCC. These groups are tasked with leading and coordinating the development of care processes for the respective diagnosis in the cooperative region and consist of healthcare professionals who are clinically active in the current cancer diagnosis and 1–2 patient representatives. There are also patient representatives in the national groups developing practice guidelines in cancer care.

Local cancer councils

In most regions, there are also local cancer councils (LCCs), which coordinate the work between the RCC and the region. All regions in the collaborative region where the study was carried out have LCCs, and their chairpersons are also members of the RCC board. All the regions have collaborations with patient organizations. A majority of them have patient and next-of-kin representatives as members of the LCC; some regions have set up their own local council for patients and their next of kin. Many of the patient representatives at the local level are involved in the RCC’s PFAC.

National working group for patient collaboration

The working group is tasked with developing the forms of patient collaboration in cancer care. The group works to ensure that the patient and their next of kin have good and equal conditions for fulfilling their assignments at all RCCs. It consists of one employee per RCC and members from the six PFACs. However, this group is to be reorganized.