Do personal stories make patient decision aids more effective? A critical review of theory and evidence

This article examines the evidence to support the addition of personal stories to patient decision aid interventions. Patient decision aids (PtDAs) are evidence-based resources designed to help people make informed decisions between treatment, or testing, options [1]. An informed decision is one that is made well and is based upon a person’s evaluations of accurate information about the advantages and disadvantages of all the treatment options and their consequences, in accordance with the person’s beliefs and personal trade-offs between these evaluations [2]. PtDAs are complex interventions with components designed to a) provide evidence-based information presented in a way that enhances patient understanding of the health problem, treatment options and their consequences, b) structure and categorise information enabling people to attend to more details with less cognitive effort and/or bias, and c) guide people in the process of reaching a decision by making explicit their values and/or trade-offs between evaluations.

Many measures are used to assess the effectiveness of PtDAs and demonstrate they enhance patients’ informed decision making about treatment and screening options over and above usual healthcare practices [1‐3]. These measures assess both a) items associated with the factors that people employ to make a decision (e.g., knowledge, perceptions of advantages and disadvantages of options, and values about health, illness, and lifestyles), and b) items associated with appraising the decision made (e.g., choice, perception of making an informed decision). In addition, PtDAs are evaluated more broadly to assess their impact on aspects of the real-world health context, such as patients’ engagement with health information and service resources, patient-professional interactions, and shared decision making [1‐3].

Personal stories are narratives, testimonials, or anecdotes that provide illustrative examples of others’ experiences relevant to the decision [4, 5]. Narratives provide a coherent, causal account of an experience that has occurred or that is expected to occur, giving a structure or plot to shape a person’s interpretation of an event or experience [6]. This narrative or story provides the meaning, time-line, and context of an event from the narrator’s perspective, causally linking their knowledge, beliefs, experiences, actions, and emotions with social and ethical mores of relevance to that person [7‐9]. Personal stories, narratives, and anecdotes are an everyday medium that people use to communicate information to others [8, 9]. Within health, illness scripts and narratives are deemed to be a valued resource to enable understanding of a patient’s experience of an illness and the impact of an illness on the patient’s life and wellbeing [4, 5, 8‐10]. Narratives are perceived as providing essential emotional and social information not usually found within routine resources that lend meaning and perspective to a patient’s predicament [7]. Evidence indicates another patient’s experience is important to a significant proportion of patients, helping them understand their illness, cope and adjust to treatment regimens, and navigate various healthcare systems [11‐13]. However, there is limited evidence on how useful patients find another patient’s story when making a decision between healthcare options [5, 10].

For those developing interventions to inform patients about health promotion initiatives intended to meet public health objectives, narrative communications are seen as a promising way of encouraging people to change their health behaviours [14]. Additionally, communicating information within personal stories is seen as particularly beneficial to subgroups of people who may have lower levels of literacy and numeracy [7, 13, 15‐20], and/or come from cultures with strong oral traditions [14], as stories may help people’s learning by providing a model from which attitudes and skills can be emulated [15]. However, findings indicate that narrative communications affect differentially the measures of people’s decision-making processes and decision outcomes, compared with non-narrative prose and/or statistical information [4, 5, 11, 21‐37]. It is equally plausible that these findings are evidence of people making their decisions based on another’s values or choices as it is that people are being supported to make informed decisions between options. What is unclear is why and how the addition of others’ personal stories to PtDAs interventions affects their ability to support patients in making more informed decisions than would result from exposure to PtDAs without personal stories or standard healthcare information.

Within healthcare, “others” can include patients, carers, family, and professionals. Personal stories may be told from the first-person (e.g., the patients’ or carers’ accounts of their own experience) and the third-person (e.g., the professionals’ or carers’ account of the other’s experience) perspectives, and in the form of representations of discussions between the patient and another person (e.g., patient plus professionals and/or carer); although stories told in the first-person tend to be twice as persuasive as those in the third-person [4]. Stories can be presented as text in leaflets (with and without photos and/or images), in audio and video clips (via DVDs and/or web resources), and in face-to-face encounters (individually or in groups). Personal stories can be delivered by the person whose story it is or by an actor.

The following are types of personal stories that could be included within patient resources:

• Testimonials of patients (or actors) talking about their experiences relevant to the decision.

• Scripted narratives of patients (or actors) talking about their experiences relevant to the decision.

• Narratives by health professionals (or actors) describing their patients’ decision making experiences.

• Documentaries (real or enacted) narrating the experience of patients with professionals and others (e.g., family, carers) when making decisions about healthcare options, usually with photographs or video stills.

• Conversations (real or enacted) illustrating the interaction between patients with other parties (e.g., health professionals, family, or carers) when making decisions about healthcare options.

Decision science, health psychology, and communication theories provide guidance on the cognitive, emotional, and motivational factors associated with people’s treatment decision making and their health and illness behaviours [11, 15, 18, 22, 38, 39]. Explanations of how people process information to make decisions generally agree that there are two inter-related systems used: an experiential-automatic process (“system 1”) that is quick, effortless, and does not require deliberation before action (e.g., relying on an heuristic or rule of thumb such as trust in another’s judgments); and an analytic-deliberative process (“system 2”) that is effortful, cognitively demanding, and requires active reasoning before action (e.g., weighing up the advantages and disadvantages of all options).

Studies exploring the effect of communicating information in different ways on peoples’ risk perceptions and intended behaviour indicate that: a) people make choices based on integrating both factual prose and narrative information; b) narrative information influences people’s choice directly (system 1) and in-directly via cognitions such as judgements about risk and values (system 2); and c) the persuasive effect of narrative, or statistical, information varies with reference to the initial perspective of the decision maker [40, 41]. In other words, people’s individual characteristics and experiences will affect what information they focus on when representing the decision and how they reason about it when it is packaged in different ways.

It is system 2 strategies that are associated with awareness of making a decision well, searching for information about all options, actively engaging with the process of reaching a decision based on the option details, reasoning about the advantages and disadvantages to them of the options (i.e., counter-arguing), and making a choice based on one’s own evaluations rather than someone else’s judgment or recommendation. As mentioned, the function of PtDAs is to encourage active thinking about the decision options and to support patients in making informed decisions—that is, to encourage use of system 2 strategies. So, patients employing mainly system 1 strategies are less likely to make an informed decision between healthcare options. Evidence indicates that aspects of the type, structure, and content of personal stories encourage people to employ automatic strategies (system 1) when processing the decision information—for example: the credibility of the narrator [25]; the affective and/or value terms used within the story [26‐29]; the social references a narrator provides implicitly when telling a story [15, 30, 31]; and the temporal and causal framework provided implicitly by having to link together events in order to tell a story [32‐34]. Equally, particular aspects of narrative communications have been identified as encouraging deliberative processing (system 2)—for example: increasing motivation to attend to the information [35]; making the information more salient and memorable [30, 31]; and modelling the process of decision making through depiction of interactions with others [20]. Consequently, it seems that information communicated within personal stories may be as likely to hinder patients’ informed decision making as to facilitate it (see Table 1).

Developers of interventions for health education and health behaviour change argue that information packaged within personal stories is more persuasive than non-narrative communications and such stories are, therefore, a useful way of presenting information to patients [14]. Some of the mechanisms explaining the disproportionately persuasiveness of narrative communications are:

a) memory – supplementary narratives within health information interrupt people’s processing, and recall, of the factual information [41];

b) evaluation – narrative information is less threatening than statistical information and so circumvents the initiation of defensive responses associated with negative affect [40], or narrative information is integrated by automatic processes and so reduces counter-arguing and is more difficult to discount analytically, or narrative information is given more weight because of the narrative’s characteristics (e.g., emotional content) [40, 41]; and

c) dual-process controller – if narrative and statistical information are processed differently, then there is likely to be an interplay between the judgments made from evaluating statistical or narrative information first, and the person’s motivation to attend to and assimilate further information [41].

What developers of standardised information need to consider when introducing information packaged as a personal story is that, because of patients’ personal experiences and values, the decision maker will respond unpredictably to the narrator of the story. In other words, the standardised information is including an element that is likely to cause variation in the information that the decision maker will attend to, process, represent, and act upon based on differences in his/her values and experiences.

Given this complex background and range of theoretical arguments, our review aims to synthesise the evidence of empirical studies published since the Butow et al. 2005 review [5] evaluating PtDAs, in order to ascertain if the addition of a personal story component enhances informed decision making.

Of 734 citations, we identified 11 articles reporting findings from 13 studies investigating the effect of a PtDA with or without a personal story on people’s healthcare decisions (see Additional file 1 - Table S1).

There is a paucity of research investigating systematically the impact of a PtDA with or without a personal story on people’s healthcare decision making. Within this review, there was variability in the way personal stories were sourced, constructed, delivered, and integrated within the intervention. Additionally, the study purpose, and therefore the function of the personal story, varied in terms of investigating biases in and facilitators of decision making, health behaviour change, or participant engagement with information. The studies employed measures consistent with the studies’ aims, but not sufficient to ascertain if the personal-story-enhanced PtDA was more able to help people make more informed healthcare decisions than the PtDA intervention alone. As a result, the synthesis was not able to identify the active ingredients of the personal story that may facilitate, or limit, the effectiveness of PtDA interventions to support people making informed decisions between treatment options. However, there were some similarities across the experimental and real-world studies, suggesting people use both personal story and factual information when making healthcare decisions, and that there is an interplay between the processing of personal stories and factual information with subsequent attention to information, evaluations, and decisions [35, 37‐40, 45, 47]. It was unclear how this interplay could be maximised to ensure patients’ healthcare decision making is supported rather than biased.

Within the review, some studies assessed individual differences in health literacy [18, 19, 45, 46, 48‐51] to investigate whether the inclusion of personal stories within PtDAs may redress differences in people’s health literacy and, ultimately, lead to greater equity in healthcare utilisation. Health literacy is a broad, multifaceted concept describing the cognitive and social skills and/or abilities determining a person’s motivation to access, understand, and use information to promote and maintain health [see 43]. The studies exploring these individual differences by intervention effects have mixed and moderate results, in part because a) few studies compared the same PtDA intervention delivered in the same way with just the addition, or omission, of the personal stories component [19, 46], and b) authors used different measures to assess different aspects of health literacy.

However, three patterns emerged. First, well-designed PtDAs contain the active ingredients associated with good health literacy interventions without the need to include personal stories [43]. Second, adding personal stories interacts with individual differences in literacy such that people with lower literacy levels respond more positively towards the use of narratives in PtDAs, whereas those with higher literacy respond more negatively to their inclusion [18, 45, 46]. Third, the addition of personal stories seems to affect the motivational and/or emotional elements associated with attending to, and recall of, information [19, 46]. It may be that the content and structure of PtDAs are already sufficient to address inequities in health numeracy and literacy skills, but personal stories enhance motivation to engage with, and perceived experience of using, the resources in some populations.

There is tremendous scope to advance understanding of the role of personal stories in patient decision making and in healthcare behaviour change. It is possible that patient stories enable PtDA developers to design evidence-based resources that increase healthcare engagement and support patients in making informed decisions. However, we need to recognise that personal stories are complex interventions with component parts that affect people’s judgements and actions independently of factual information. To understand what are the active components within stories used in healthcare information, and whether they facilitate or bias decision making, authors need to describe in more detail their structure, content, and function. Shaffer and Zikmund-Fisher [16] are developing a taxonomy to guide those developing and/or using personal stories within healthcare information to think critically about its purpose (e.g., to inform, engage, model behaviour, persuade, or comfort) and content (e.g., the process of decision making; the decision experience; the decision outcome). In addition, authors should consider explicitly the mechanism or rationale explaining why the story impacts on a patient’s awareness, understanding, and/or assimilation of the decision information differentially from non-narrative or factual information.

This review of studies indicates that people engage differently with a PtDA when it includes a personal story component. PtDA interventions are evidence-based resources designed to enable patients to reason about the relevant evidence-based information to make an informed decision. Personal stories contain complex and detailed information about, usually, one (or more) person’s experience with an illness, with a decision-making process, and with the consequences of making a healthcare choice. The narrative both structures and interprets the information so that it makes sense from the narrator’s perspective. Packaging information as a story affects people’s use of both system 1 (intuitive-experiential) and system 2 (deliberative-analytic) information-processing strategies. Research studies need to be designed so as a) to assess the effect of a patient story on people’s decision making over and above that of a PtDA, using measures to gauge the effectiveness of a PtDA in supporting people’s informed decision making, and b) to understand the effects of different ways of communicating information on the people’s decision-making strategies. It is essential to the field to elicit evidence illustrating what type of personal stories are a) more likely to motivate people to engage with PtDAs to make reasoned decisions (system 2), and b) less likely to make a choice based on another’s values (system 1). Measures currently used to evaluate improvements in decision quality and outcome when comparing PtDAs and usual care practices [3] may not be sufficient to elicit evidence of the impact of different components within PtDA interventions on the system 1 and system 2 strategies that people employ when making decisions. Without this evidence, it is unclear if the addition of a personal story enhances or counters the effectiveness of a PtDA to support patients’ informed decision making.