Making sure that people give their voluntary and informed consent to sharing their story is an essential way of supporting consumers to be in control of how and whether they share their experience with you.[22] To give free and informed consent, people need to know: 

  • Why you are asking for their story
  • What you would like to talk to them about
  • What you’ll do with what they tell you
  • In practical terms, what their participation will involve
  • Any possible risks to them that they you can identify
  • How you will inform them about the outcomes or findings of your work. 

It is worthwhile considering whether there are any other purposes for which you might use consumer stories, other than to inform the decision-making task you have identified. For example, many healthcare organisations find that consumer stories are very helpful for educating staff about consumer experience and consumer perspectives, or for educating their wider community about these matters. If you would like to use stories for these purposes, you must seek consumer’s consent. Clearly outline the different purposes for which you’d like to use stories, and allow people to give their consent to one or all of these. If using stories for educational purposes, specify the audience (e.g. doctors and nurses in your health service, health professionals in your region, or health services users in your region), and if possible specify the way the story will be shared (e.g. in a report, in learning or training material, or on your Internet site). Request time-limited consent to use the story, for example for 12 months or 2 years. You will need to have a process in place to ensure that the story is no longer used after the time period expires.

References:

[22] Ball, Rachel (2013) When I tell my story, I’m in charge: Ethical and effective storytelling in in advocacy (Victoria Law Foundation: Melbourne), p50

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