Collect Patient and Carer Stories

NSW Health's Redesign Program has developed a method for capturing and analysing patient and carer experiences.

The method of enquiry deliberately goes beyond questions of satisfaction, and explores patient and carer perceptions of their care and what the patients experienced.

When it is skilfully employed, the method enables NSW Health service managers and health leaders to:

  • understand exactly 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 who have experienced a particular patient journey within the past month. The method features:

  • a lightly structured discussion using open questions;
  • discussions conducted in the patient and carers own home or venue of their choice;
  • facilitation by suitably skilled staff.

Patients and carers are informed about the intention to understand and improve the health service. They're invited to describe their recent health care experience and to reflect on the most positive aspects of their experience and constructive criticism. They are reassured about the benefits their input will bring to improving the NSW Health system and the fact that their privacy will be carefully guarded.

This site includes detailed information and resources about the method. If you are interested or wish to comment, please email




1. Identify and invite individual patients and carers to participate


  • Define target population
  • Invite them to take part
  • How many to interview
  • Avoiding bias

A Guide for Collecting Patient & Carer Stories PDF File (1.3 MB) 

Participant Invitation Letter Template Word File (28 KB)

Participant Invitation Letter (PDF File 83 KB)

Participant Invitation Letter - Arabic (PDF File 159 KB)

Participant Information Sheet PDF File (112 KB)

Participant Information Sheet Word File (88 KB)

Generic Participant Information Sheet Word File (63 KB)

Patient Survey Information PDF File (120 KB)

Patient Survey Information - Arabic PDF File (172 KB)

Patient Survey Information - Italian PDF File (119 KB)


Participant Consent Form  PDF File (91 KB)

Participant Consent Form Word File (62 KB)

Patient Consent Form PDF File (93 KB) 

Patient Consent Form - Arabic PDF File (144 KB)

Patient Consent Form - Italian PDF File (119 KB)


Story Collection Process PDF File (54 KB) 

Story Collection Form PDF File (199 KB)

Story Collection Form Word File (141 KB)


What Patients Value Pie Chart PDF File (953 KB)

What Patients Value Pie Chart with Definitions PDF File (958 KB)

What Patients Value Pie Chart A3 PDF File (512 KB)

What Patients Value Definitions PDF File (56 KB)

What Patients Value Indigenous Pie Chart PDF File (357 KB)

What Patients Value Indigenous Pie Chart with notes PDF File (421 KB)

Dimensions of Care Pie Chart PDF File (66 KB)

Dimensions of Care Pie Chart - Arabic (PDF File 169 KB)

Dimensions of Care Pie Chart - Italian (PDF File 104 KB)


Analysis Spreadsheet excel_icon (99 KB)

Participant Thank You Letter  Word File (51 KB)

Timeline template Powerpoint file (1.2 MB)



These resources were last updated 18/03/11.

2. Set up the discussions

  • Where to interview
  • Who should attend
  • How long it will take

3. Facilitate the discussions

  • Skills required
  • Introductions
  • Skillful listening and questioning
  • Analysis
  • Ending the discussion

4. Record and analyse the insights of patients and carers

  • How and where to record insights

5. Presenting the results

  • Data
  • Patient and carer insights

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

  • Target the top problems (as shown by data)
  • Use insights to design solutions
  • Who else in needs to know/act?
  • Discuss your solutions with other patients and carers

7. Remeasure to see if your solutions worked




Date created: 28th Jul 2006 | Date reviewed: 22nd Aug 2013