The Place of Narrative in Healthcare Decision Making

People use stories and narrative to think, communicate, and make decisions about important facets of their lives, including healthcare. Narrative—the accounts of real-life events, either spoken or written from the viewpoint of someone who has experienced them—often shapes a person's approach to healthcare decisions, yet narrative is usually excluded from the medical evidence base, and it rarely plays a role in original research reports.

Stories and judgments, as well as other forms of narrative, remain poorly understood, said Daniel Dohan, PhD, of the Philip R. Lee Institute for Health Policy Studies at the University of California San Francisco, and colleagues, who studied the role of narrative in patients’ healthcare decision making in their analysis in the April 2016 issue of Health Affairs.

The authors envision a future in which it will be important to integrate narrative data into health science research and healthcare decision making. Developing new qualitative research tools could help ensure that patients, clinicians, researchers, and policy makers account for and benefit from the power of stories in health decision making.

In healthcare decision making, narrative can trump the evidence base for several reasons, according to the authors. Medical evidence may not measure patient-centered outcomes, may not include diverse populations, and may overlook issues related to chronic illnesses or comorbidities.

“Quantitative data can be confusing or seem irrelevant in the midst of decision making,” the authors wrote.

In contrast, accounts of illnesses and treatments, cautionary tales, previous experiences, and common sense, may seem more compelling.

“Such narratives may not constitute a reliable basis for sound healthcare decision making on their own, but handled appropriately they can be helpful to patients and clinicians,” according to the researchers.

Dr Dohan and his colleagues describe new tools and approaches that can be used to link narrative-based, qualitative research findings with quantitative health science scholarship so that narrative can be more fully integrated into the medical evidence base and evidence-based medical practice. Among their suggestions is the recommendation to embrace insights and perspectives gleaned from stories and narrative and examine what narrative means and how to distinguish data from anecdote.

The article cited a critical need to establish guidelines for qualitative research, but concedes that there have been many unsuccessful attempts to create such guidelines.

Furthermore, there are not yet ways to adequately shield the confidentiality of research subjects in large qualitative health studies, because aggregating data to preserve confidentiality destroys the richness that makes qualitative data valuable. Thus, innovative approaches are needed to allow for sharing of qualitative data on a large scale, something that is needed if narrative is to take its rightful place in the healthcare decision making process.