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Include user generated content – quotes, tips and stories where appropriate

carePatient experience and stories can be used in health information to educate and support patients. Users value highly other people’s descriptions of their experiences, and patient testimonials can help make health information materials more memorable, realistic and comprehensible.

Personal narratives and can help people to imagine what it is like to live with a condition or the effects of treatment. The amended IPDAS criteria state that, used appropriately, without bias, they could possibly help patients to make ‘good’ decisions.

DISCERN criteria state that experiential information on treatment choices must be balanced and unbiased, and should not be presented in a sensational, emotive or alarmist way. Personal stories have been found to affect patients’ values and judgements and the choices they make, differently from facts presented in non-narrative prose and statistical information.

Information producers should be especially wary of appearing to ‘steer’ people facing difficult medical decisions by offering other individuals’ experiences as potential ‘role models’ to follow. Involving user voices with a range of perspectives and experiences, and explaining the rationale for including particular examples, may help in achieving the desired ‘balance’.

Why is this important?

Participants reported having used 'personal experiences' information to: recognise decisions that needed consideration; identify options; appraise options and make selections (including by developing and reflecting on their reasoning about possible choices); and support coping strategies. Their inclination to use 'personal experiences' information was apparently moderated by assessments of personal relevance, the motives of information providers and the 'balance' of experiences presented.

Entwistle VA, France EF, Wyke S, Jepson R, Hunt K, Ziebland S, Thompson A., How information about other people’s personal experiences can help with healthcare decision-making: a qualitative study. (2011.) 85(3):e291-8. doi: 10.1016/j.pec.2011.05.014. Epub 2011 Jun 8.. Patient Education and Counseling.

Because of the potential that narratives might have unintended effects on risk communications, we suggest (a) that narratives should be used with caution until research better clarifies their effects, both positive and negative, and (b) that developers be more cautious about using narratives when attempting to present unbiased information for informed decision making than when attempting to be persuasive and promote behaviour change.

Trevena L, Zikmund-Fisher B, Edwards A, et al., Presenting quantitative information about decision outcomes: a risk communication primer for patient decision aid developers. (2013.) 13(Suppl 2).. BMC Medical Informatics and Decision Making.
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