New health technologies, diagnostic and therapeutic capabilities are continually being developed and implemented, along with constant reform of the supporting health services and systems. It is critical that health services understand how health care users perceive services and if services are fit for purpose. All Australians can contribute to health care design and support change to improve health service delivery. Changes in health care delivery or health care reforms should at the outset document the rationale for change, how and in what way services will change, the measurements that will be used to determine that change has occurred, how a successful outcome will be defined, and which parties were included and excluded from the consultation and change process.

This report documents the discussions of the inaugural “Indigenous patient voices: Gathering perspectives finding solutions for chronic and end-stage kidney disease symposium.”

The priorities of health care users, the expert-patients, and carers are documented. The expert-patient delegates highlighted a number of barriers to delivering quality health services for chronic and end stage kidney disease. The feedback from expert-patients provides a clear rationale for health care reforms.

There was agreement by the non-patient-carer delegates that reforms were needed to improve access to and utilisation of health services. Key issues discussed included where and how services were provided; how health information was provided; communication processes and the makeup of the renal health care workforce.