Patient 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’.