Given the objective of evidence-based health information, the question arises as to what role experience reports (narratives) from patients play as a component of evidence-based health information.
In this issue, narratives are defined as follows: Narratives are personal and individual experience reports on aspects of an illness that are embedded in the biographical and social background of a person. All aspects of an illness can be addressed. They often contain implicit or explicit descriptions of types of behavior, coping strategies or decision-making processes. Fictitious or authentic, written in the first or third person, they often follow an action, contain concrete examples, details and characters. They are seen as a component of health information (1-3).
Experience reports are widespread in journalism and are used increasingly in health information and to support decision-making (1, 4, 5). Narratives are an everyday form of communication and are therefore seen as being easier to understand and remember, and are more appealing than statistic information that is in the center of evidence-based information (6-8).
There is, however, the possibility that empirical reports may have undesired effects that are opposed to the aspirations of evidence-based health information. It is not clear what influence they have on decision-making processes.
One of the difficulties lies in the fact that the term „experience report“ is not defined exactly and that it includes a very heterogeneous group of sets of information, which have only one thing in common: they convey the perspectives of one single person. A narrative often describes how a (real or fictitious) person has coped with a challenge or has managed a certain situation.
Experience reports should serve various purposes, i.a.:
- They should invoke interest for a certain theme or subject.
- They should describe the emotions and social burdens associated with an illness so that the persons concerned can compare their own experiences with those of others and thus realize that they are not alone with their feelings.
- They should serve as “packaging” for imparting factual information and knowledge.
- They should impart opinions and be used objectively as part of campaigns for influencing risk perception and motivation.
These elements can be combined with one another in one single experience report. This can be explicit or implicit and be targeted and deliberate or random/accidental. In order to ensure that experience reports primarily provide access to how an illness is experienced and how the consequences are dealt with, it must be possible to edit them in such a way that they do not contradict statements of evidence and do not contain any explicit recommendations.
Certain types of experience reports are aimed at having a strong impact on users, they should appear “persuasive”. The persuasive effect of deliberately prepared experience reports is used intentionally in areas of prevention and health promotion, especially to reach special target groups or large populations in the sense of Public Health and to influence their behaviour (1, 3, 7, 9). In the field of social and cognitive psychology, the assumption that personally described experiences of ideas convince and influence behaviour is reputable and has been well researched (10).
However, it is possible that other types of experience reports may impede the various options for a decision being equally considered. On the basis of the open questions, the International Patient Decision Aids Standards (IPDAS) Collaboration has reached a consensus that narratives need not be included in high quality decision-making support (1, 11).