JIgsaw puzzle pieces being put together on a yellow background

The Kidney Patient as Navigator: Co-Producing a Way through the Health and Care System

This project is a co-produced study of the experiences of people with chronic kidney disease and multiple other long-term conditions when navigating the health and care system.

It stems from a series of discussions among a group of patients, brought together through kidney patient networks, and academic researchers, to identify their priorities in patient-driven kidney research.

Through their own lived experience, the group members recognised the significant challenges that patients face when navigating the intricacies of the health and social care system to receive appropriate holistic care. This can, in turn, negatively influence their wellbeing and quality of life. The group concluded that this was a priority theme for research, with this project seeking to identify opportunities for improvement, through patient education and empowerment, or systems changes.



The project has four core objectives:

  1. To collect, review and understand the experiences of people living with chronic kidney disease and multiple long-term conditions in navigating the health and social care system
  2. On the basis of these findings, to co-create targeted information materials for patients and their carers.
  3. To develop and disseminate recommendations for improving integrated care for kidney patients in the UK.
  4. A cross-cutting objective to monitor, review and evaluate the co-design and production process that the group followed, to provide guidance for future research.

The study also aims to pinpoint gaps in research and needs for future investigation.


Research Methodology:

The work programme for the study uses a flexible, mixed-methods approach, employing both quantitative and qualitative methods (surveys, semi-structured interviews, focus group discussions and online fora).

The study is divided into three work packages, each corresponding to the first three objectives listed above and adopting a collaborative, patient-led approach throughout. Each stage of the work programme will be designed to build upon the findings of the previous phase, and to involve a broadening range of stakeholders, including family members and health and care professionals.