Page 54 - Experience Based Co-design - a toolkit for Australia
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Remember to consider positive stories. Patients may be able to identify “bright spots” and solutions that may form the core of improvement strategies that can be spread. Even a single patient story about a negative experience can be useful in developing improvements. What matters is that the cause of the experience is explored and the probability of a repeat experience reduced. Specific aspects of stories (such as critical events and feelings) can also be quantified using experience-based surveys.
Make sure the session is focused on patients and their experiences. Minimise any need to ask structured questions and to cover topics of little or no relevance to them. Patients may often hold values that are not relevant to their service experiences, but respect their views nonetheless. Don’t debate the correctness of their views in any way. If the patient has extreme views of the service, accept these. If the patient’s experience includes a significant misunderstanding, carefully suggest this and explore what difference this information make for them.
Make an offer to provide more accurate information. If the patient is abusive of service staff in any way, try to understand the cause (such as the specific behaviour) without agreeing or disagreeing with their view.
If patient experiences include any examples of unethical service or staff behaviour, or unresolved problems, carefully point this out (they may not realise this) and offer to help the patient address these. Be proactive and don’t use the research as a barrier to improving patient outcomes. Make sure you fulfil any commitments to act on their behalf.
Conduct the interview in a culturally sensitive and appropriate manner. Storytelling is a feature of Indigenous societies and is sometimes known as ‘yarning’. The Lowitja Institute have produced a guide for researching Indigenous Health.
             Adapted with permission from

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