Resources to Capture the Patient & Carer Experience


The following resources outlines and supports a simple, practical method for collecting and analysing patient and carer stories. Essentially, the method involves holding discussions with a number of patients and carers and drawing out the most positive and negative aspects of their experience.

​Step by Step


​1. Identify and invite individual patients and carers to participate:

  • Define target population

  • Decide how many to talk to

  • Avoid bias

  • Invite them to take partake

Collecting Patient & Carer Stories: A Guide for Frontline Health Service Staff who wish to Understand and Improve Patient and Carer Experience

Invitation Letter Template

Participants Information Sheet Template

Participants Consent Form Template

​2. Set up meetings:

  • Where to hold the discussion

  • Who should attend

  • How long it will take

Checklist to facilitate the discussion

​3. Facilitate the discussions:

  • Skills required

  • Introductions

  • Skilful listening and questioning

  • What patients/carers value

  • Ending the discussion

Checklist to facilitate the discussion

​4. Record and analyse the stories of patients and carers:

  • How and where to record patient and carer insights

Interview Template

​5. Present the results:

  • How to present qualitative insights

  • Compare with other data sources -

 - Patient survey

 - Complaints & compliments/IIMS

 - Tagalong/ observations

​6. Use the knowledge to improve patient and carer experience:

  • Target the most significant problems (as shown by data)

  • Use insights to design solutions

  • Who else needs to know/act?

  • Discuss your solutions with patients and carers

​7. Re-measure to see if your solutions worked


These 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 project you will be required to complete an Application for Variation form. Once you have completed this form,  email a word  & pdf versions including any attachments to