Patient Voices at the EKPF Summit: Focus Group on Sustainable Kidney Care

Following our recent visit to UNIMORE in Modena (shared in my previous blog), Frances Mortimer (Work Package 3 Lead) and I (Work Package 3 Project Manager) travelled on to Milan to attend the European Kidney Patients’ Federation (EKPF) Annual Summit.

The EKPF Annual Summit brings together patient representatives from across Europe, creating a valuable opportunity to hear a wide range of patient perspectives in one place. We were able to hold a focus group during the summit, exploring how patient representatives view sustainability-related changes in kidney care. We are very grateful to Juan-Carlos and Mónica from EKPF, whose support and organisation made this session possible.

In total, 24 patient representatives took part in the focus group. 

The focus group focused on four sustainability changes being piloted by KitNewCare sites across Europe:

• Autoflow
  Dialysis machines can use “Autoflow”, which automatically adjusts the dialysate flow to match the patient’s blood flow (set at 1.5 times the blood flow), rather than using a fixed high flow rate for everyone.

• Reducing unnecessary blood tests
  Clinicians review which blood tests are truly needed, with some routine monthly tests reduced to every three months where it is clinically appropriate.

• Improving waste segregation and disposal
  Hazardous waste is reduced through better sorting, using clearly labelled bins and staff training. Some waste, such as packaging, can then be safely processed for recycling.

• Change from sterile connection packs
  In appropriate situations, sterile connection packs used when placing dialysis needles into a fistula are replaced with non-sterile protective sheets and gauze, without compromising safety.

We split into three small groups, with each group discussing two changes. Across the discussion, participants reflected on the perceived value of sustainability changes, whether they felt acceptable and fair from a patient perspective, and how these kinds of changes should be communicated to patients. 

The insights from this focus group are now being analysed. They will be shared with the KitNewCare pilot sites to support reflection on patient perspectives and to help inform how sustainability changes are implemented in practice. We also plan to publish the findings more widely, so that patient-informed perspectives on sustainable kidney care can contribute to learning beyond the project.

Patient involvement is essential if sustainability in kidney care is to be successful,  not only environmentally, but also in ways that are meaningful and acceptable to those receiving care.

I would like to sincerely thank the patient representatives who generously gave their time, shared their experiences, and contributed thoughtful insights to the focus group, their perspectives are invaluable in shaping sustainable kidney care that truly reflects patient priorities.