Do Personal Stories Make Patient Decision Aids More Effective? An Update from the International Patient Decision Aids Standards

Abstract

Background This article evaluates the evidence for the inclusion of patient narratives in patient decision aids (PtDAs). We define patient narratives as stories, testimonials, or anecdotes that provide illustrative examples of the experiences of others that are relevant to the decision at hand. Method To evaluate the evidence for the effectiveness of narratives in PtDAs, we conducted a narrative scoping review of the literature from January 2013 through June 2019 to identify relevant literature published since the last International Patient Decision Aid Standards (IPDAS) update in 2013. We considered research articles that examined the impact of narratives on relevant outcomes or described relevant theoretical mechanisms. Results The majority of the empirical work on narratives did not measure concepts that are typically found in the PtDA literature (e.g., decisional conflict). Yet, a few themes emerged from our review that can be applied to the PtDA context, including the impact of narratives on relevant outcomes (knowledge, behavior change, and psychological constructs), as well as several theoretical mechanisms about how and why narratives work that can be applied to the PtDA context. Conclusion Based on this evidence update, we suggest that there may be situations when narratives could enhance the effectiveness of PtDAs. The recent theoretical work on narratives has underscored the fact that narratives are a multifaceted construct and should no longer be considered a binary option (include narratives or not). However, the bottom line is that the evidence does not support a recommendation for narratives to be a necessary component of PtDAs.

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“…All patients benefit, however, those with low literacy skills are especially likely to benefit 32. There may be situations where personal stories and narratives could enhance the effectiveness of PtDAs, however, given the heterogeneity of both disease process and surgical intervention it could produce bias and persuasion 33. There is also insufficient evidence that adding personal stories to decision aids increases their effectiveness to support people’s informed decision-making 34…”

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“…16 17 They concluded that there should not be a blanket recommendation for patient narratives to be included in patient decision aids due to mixed findings on their effectiveness and the potential to bias patients' judgement and decision making. 17 However, the review acknowledged that narratives can be a powerful tool to communicate information and to address issues of health literacy. 17 Narrative persuasion research has argued that narratives can provide conversational scripts for the audience to engage in interpersonal discussion by showing characters in the story successfully modelling the behaviour.…”

“…17 However, the review acknowledged that narratives can be a powerful tool to communicate information and to address issues of health literacy. 17 Narrative persuasion research has argued that narratives can provide conversational scripts for the audience to engage in interpersonal discussion by showing characters in the story successfully modelling the behaviour. 18 19 For instance, a study by Moyer-Gusé et al 20 found that when audiences identified with the character in the narrative that had a conversation about safe sex behaviour, they had greater intentions to engage in safe sex discussions.…”