Page 53 - Experience Based Co-design - a toolkit for Australia
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      3. Encourage patients to tell their own stories on their own terms and at their own pace
Start by asking open-ended questions such as “how did things start for you?” or “when did you first notice anything unusual?”
Continue to use open-ended questions such as “what happened next?” and “what was going on for you at that time?” until they have reached the end of their story.
In group discussions, it can be useful to ask people to tell their stories in groups of two or three to develop shared stories. They may then summarise and write these down as three to five ‘chapters’ (describing the major phases) with key experiences summarised under each.
4. Invite patients to reflect on their own experiences
Start by asking open-ended general questions such as “overall, what do you make of your experiences?” before moving into specific examples.
Continue to use open-ended questions such as “what specific experiences stand out for you as particularly good or bad?”, “what did you make of X experience?”, “how did you deal with X experience?” and “what did X experience suggest to you about the service?” until they have reflected as much as they want.
Patients may have reflected on their experiences already, so encourage a deeper exploration while avoiding repetition at this time.
One way to encourage deeper reflection is to offer comments other patients have made and invite discussion from their own experience.
In group discussions, it can be useful to summarise their reflections on specific experiences under the relevant phases.
5. Invite patients to suggest improvements
Focus on things that would have made all the difference to patients’ own specific experiences. Start with an open question, such as, “what could have been different for you?” or “what changes in the service would make a difference for you?”
Remind patients of any ideas they have already mentioned.
Include any ideas you want to check at this stage.
When the ideas have all been covered summarise by asking, “if all these things were done what difference would that have made for you?”
6. Paraphrase patient experiences, their reflections and their suggestions
Check you have understood correctly and that you aren’t missing anything out. Invite them to comment on, or add anything, to what you have paraphrased.
7. Give a simple, concise outline of the next few steps in the project
Including when and how any improvements will be made.
Patients will want to know they are making a tangible difference to service quality and to the experiences of future patients. You may also need to share contact details so you can review any details of their experience and/or provide patients with a summary of the research, and so they can follow-up with you at any time.
                      Adapted with permission from

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