Capturing Patient & Carer Experience



There is now a widespread realisation that patients’ involvement in care improvement is not optional but essential to achieving high quality of care. Understanding the patients’ perspective about their experience in the health services can offer great insight to the gaps in service delivery and ways to improve it.

NSW Health has developed a method of collecting and analysing stories about patient and carer experiences. The method deliberately goes beyond questions of satisfaction, and explores patient and carer perceptions of their care and what they actually experienced.

When it is skilfully employed, the method enables staff members to:

  • Understand what is currently working well and where patient and carer experience can be improved

  • Collect "mobilising narratives" that help inspire health teams to improve their service.

The method involves discussions with a number of patients and carers of a particular service who have had recent contact with the service, e.g. within the past month.

The method features:

  • A semi-structured discussion using open questions

  • Discussions conducted in the patient and carer’s own home or venue of their choice

  • Facilitation by suitably skilled staff

Ethics Approval Process within Hunter New England

A generic HNE process and resources to capture patient and carer stories have been approved by the Hunter New England Human Research Ethics Committee, Reference 16/07/20/5.02.

To capture the patient & carer stories for your particular project you are required to obtain additional approval by completing a variation form to HNE approved generic process to capture patient stories.  Please use this variation form to  capture patient & carer experience  which has been partially completed  with the following information: HNE generic title, reference number and Chief Investigator for the HNE generic project process.  The form includes prompts [in red]  to assist in providing accurate information required for variations to the HNE generic process. Once you have completed this form, email a word  & pdf versions including any attachments to

Please consider the following when completing the application for variation form:

Variations should not be inconsistent with the approved methodology or recruitment as detailed in resources to capture the patient & carer experience.