What happens when you involve patients as experts? a participatory action research project at a renal failure unit

Although there is a trend towards developing health care in a patient-centred direction, changes are usually planned by the professionals without involving the patients. This paper presents an ongoing participatory action research project where patients with chronic renal failure, nurses at a specialist renal failure unit, a hospital manager and a researcher worked together to develop patient-centred care. The project combined the expertise of patients in their own experiences of living with a chronic condition with the professional expertise of nurses, the manager and the researcher. As the workload on the unit was uneven, the development work needed to be low in intensity but long-term. Based on a number of dialogues in focus groups, four main development areas were identified; access to test results, prerequisites for postponing the progress of the illness, general awareness and understanding of living with chronic renal failure, and family-focused care. A number of changes have been planned or implemented, such as developing a prototype for a web-based feed-back system, expanding patient education to newly diagnosed patients, steering the nurses' role towards a guiding and family-focused function, and planning a digital story-telling workshop. Involving committed people who have the mandate to change practices were prerequisites for success.