Lead researcher RBWH Senior Social Worker Jenny Kirby and her team partnered with consumers to learn from their lived experience with advanced chronic kidney disease (CKD) to co-design a care plan. 

The RBWH Kidney Supportive Care Service (KSC) is an interdisciplinary service delivering care to people with chronic CKD, assisting patients and carers with the patient's complex health and needs. The Advancing Kidney Care 2026 (AKC2026) Framework states that patients and/or carers should receive a copy of their care plan, documenting their goals, values and preferences for care. Consumer feedback gathered over the past seven years at RBWH KSC shows that 35% of respondents attending the service would like more information from medical appointments. There is, however, no validated tool in literature/research. This project partnered with a group of consumers and clinicians to co-design a solution intended to assist patients and carers remember and act upon the information/advice from their KSC appointments.

The team conducted focus groups and interviews to assess what the problem looked and felt like for consumers. It then established what a solution could achieve for those involved. Informed by the views and experiences of consumers, a Kidney Supportive Care Appointment Summary template was designed. The template is interactive and can be tailored to the individual person’s appointment, with a copy then provided to the patient. Surveys were used to evaluate the template, with results indicating positive responses from both consumers and clinicians. The project has developed a tangible method that the clinicians of KSC can use in everyday practice to improve shared care planning.