Page 51 - Experience Based Co-design - a toolkit for Australia
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Patient stories are an opportunity for patients to talk about their experiences, either individually or in a group setting.
The purpose of patient stories is to explore and understand patient experiences of their condition and of health services over time. Patient stories can help other patients make sense of their experiences and help services understand how these might be improved.
One or more stories can be used as reference case studies or evolved into patient journey mapping or scenarios and personas to help guide your improvement work.
Patient stories are best gathered early on in your co-design work to help you identify and develop improvements. They can also be useful later on when you are designing changes such as during prototyping and monitoring the effects of improvements such as with the biggest difference tool.
Deciding your approach:
There are two main ways of gathering patient stories: individual interviews and group sessions.
1. Interviewing individual patients with their families and other supporters:
Such interviews provide considerable detail about the patient experience of both their condition and the service. They are useful for exploring subtle nuances, though identifying these can depend on a researcher’s familiarity with general or expected experiences.
2. Talking to patients in groups (with similar conditions or service experiences): Patients typically have few opportunities to ‘share and compare’ experiences with other patients in any detail, so group discussions can help explore common experiences. (Group discussions are also useful for brainstorming improvements that can make a big difference to patient experiences.)
Patient stories can be analysed in a number of ways, depending on the scope of your project and your own approach to service improvement:
o The structure of the story – typically the story is organised around the phases of their condition and/or the service steps they went through, with emotional highs and lows interwoven with these
o The content of the story – such as the experiences they went through, with attention to the nature and intensity of different experiences over time
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