Exploring the ‘life as told’

Editor's note: Greg Chu is principal at KMK Consulting Inc., a Morristown, N.J., research firm.

We all appreciate a good story. As researchers, however, we sometimes overlook the power of narrative in exploring one of the most basic topics in health care market research – the patient journey. When we rush to impose prefabricated schema on the patient’s encounter with illness, we can miss the explanatory arc that emerges from the story that the patient tells about his or her own journey – a story that breathes life into the otherwise dry itemization of events which punctuate the patient experience. “What happens is of little significance compared with the stories we tell ourselves about what happens,” wrote the novelist Rabih Alameddine. “Events matter little, only stories of events affect us.”

Those who wish to tap into the power of stories can draw from a rich and interdisciplinary body of theory. Sociology, psychology, philosophy and literary criticism have all contributed to the mining of insights from patient narratives. Unfortunately, much of the academic literature provides little practical guidance for how the market researcher can apply narrative theory or make it relevant in a commercial setting. In this article, we provide an overview of how a narrative analytic approach can be utilized to add value in qualitative patient journey research.

Spans the patient’s experience

The backbone of the traditional patient journey is a chronologically-ordered series of events and actions that spans the patient’s experience of illness. The scope of the journey may be narrowly defined as beginning with diagnosis and ending with treatment or cure but may expand to encompass the patient’s life prior to the onset of illness and project beyond the present to an anticipated future state. Most commonly, understanding of the journey is derived through individual depth interviews, beginning with the patient but often including additional actors, such as health care professionals, caregivers and other providers of support. The events and actions which shape the patient journey also leave their traces in patient charts, prescription fills and insurance claims. Combined with interviews, analysis of such quantitative data can render a reasonable facsimile of the sequence of acts that punctuate and define the patient experience.

Ordering and aligning the events and actions that demarcate the patient experience with illness is essential to understanding the patient journey. But it is not sufficient. Acts reveal only the patient’s outer journey, the matter-of-fact flow of events theoretically accessible by observation. Inextricably intertwined with this event-based journey is a second one, an inner patient journey structured around thoughts, feelings and evaluations. The anthropologist Edward Bruner echoes this distinction within a larger context: “A life as lived is what actually happens. A life as experienced consists of images, feelings, sentiments, desires, thoughts and meanings known to the person whose life it is.” He then defines narrative as the “life as told,” produced by the teller to convey a sense of the life that is both lived and experienced. Exploration of this “life as told” can often reveal deep insights into patient behavior and psychology for it seamlessly integrates the inner and outer patient journeys from a patient-centric perspective.

A nearly universal competency

The good news for practitioners of narrative interviewing is that storytelling is a nearly universal competency. Researchers may generally assume that respondents understand what it means to tell a story. Despite differences in education, subculture or facility with language, interviewer and respondent are likely to share a common concept of what constitutes a story: a teller, a listener, setting, characters, motivation and plot. More often than not, a patient’s narrative will self-organize, linking together past events and actions and leading to the present in a more or less coherent fashion. Accordingly, after establishing a degree of rapport and expressing an interest in the patient’s experience with illness, it is often sufficient for the interviewer to simply suggest a conventional opening such as “Once upon a time” to get the story started. The interviewer then moves into intent listening mode, providing only non-directive encouragement while the “life as told” unfolds.

In contrast to physicians, who tend to concentrate on the immediate physiological aspects of disease, patients typically view their illness within the context of their past, their future, their relationships with others and their self-identity; in other words, they see their patient journey within the context of their life journey. A breast cancer patient begins her story in an online diary not with her diagnosis but with grade school: “I started swimming in elementary school and have been an instructor for 20 years now. I was participating in the Master’s Association for swimming but had to stop because of illness. This year I had planned to get back into training but then got hit with breast cancer.” For this patient, breast cancer is not the beginning of her story. It is an interruption in her life story. While patient stories are generally self-organizing and do not require the active intervention of the interviewer, their organizing principles may not be immediately obvious. What may seem at first like aimless narrative digression can become meaningful as the story progresses. The challenge for the interviewer is to resist the urge to prematurely redirect the emerging narrative while attending not only to the narrative content but to its structure as well.

Once the storytelling phase of the interview is complete, the researcher will probe on parts of the story that are not clear and ask the patient to fill in gaps in the story flow. Here the researcher moves from listener to the more familiar role of interviewer. Various stimuli and projective techniques can be profitably employed at this point to bring greater depth to the stories told by patients. One approach is to present the respondent with the possibility of having their story turned into a film. The interviewer can pursue various avenues of inquiry under this premise. What would the film be called? What actor would play the patient, the physician or other key characters identified in the narrative? How would the film end? Names or photos of actors can be provided as additional stimulus. The point is not which actor is selected to play the patient and which the physician. The choices made are useful only to the extent that they lead to a deeper discussion of the patient’s self-image, his goals and motivations and interactions with physicians and other stakeholders.

Numerous frameworks

As indicated earlier, narrative theory has evolved under the influence of a diverse range of academic disciplines and within the context of a wide range of applications. It is not surprising then to discover that numerous frameworks have been developed to analyze narratives – even within the relatively segregated area of illness narratives. One frequently-referenced framework with particular utility in patient journey research comes from sociologist Mike Bury, who identifies three narrative forms: the contingent, the moral and the core. These three forms exist to a greater or lesser degree in all patient narratives. Once identified and analyzed together, they provide the essential elements required to make sense of the intertwined helixes of the inner and outer patient journey.

Contingent narrative addresses patient beliefs about the origins of disease, proximate causes for specific illness events and the impact of illness on daily life. It details the actions taken to deal with illness and the mobilization of social and psychological resources to maintain or improve quality of life. Perhaps most importantly, the contingent narrative reveals the patient’s causal belief system, which often turns out to be patchwork of biomedical and lay understanding – or misunderstanding – of disease. A man in his late twenties speculates on the origins of his depression and recalls the bullying he suffered at the hands of fellow students in elementary school. “The abuse eventually stopped”, he recalls, “but I had already come to the conclusion that I had no talent for anything, and that kind of thinking, once started, can never change.” The causal belief system revealed through this contingent narrative helps explain the specific actions taken by this patient, as well as his perception of relapsing depression as inevitable. Such understanding can be invaluable in developing health care communications and patient education programs.

To the extent that illness limits the patient’s ability to shoulder responsibilities at home, perform at work or participate fully in other activities, familiar social roles and self-identity are set adrift. If there is stigma attached to the illness or if the sufferer’s response to illness is out of step with societal expectations, the patient may also find their sense of self-worth under assault. Within Bury’s interpretative framework, how the patient explains, evaluates and integrates these changed relationships and perceptions of self-worth through their story of illness is called moral narrative. A diabetes patient sees his condition as an avoidable consequence of a lack of self-control: “I was diagnosed with early-stage diabetes and honestly, I knew it was going to happen. I always ate and did what I wanted without thought or regrets.” In his illness narrative, he acknowledges his fall from grace and commits himself to a more virtuous lifestyle so he can care for his family and see his young son grow up. Another diabetic provides a litany of reasons for her inattention to her illness and poor glycemic control, explaining with some exasperation, “I know it all sounds like just a lot of excuses but they are all true!” In her narrative, she pleads a case for sympathy rather than censure since she is doing all that anyone in her circumstances could be expected to do. The identification and deconstruction of such moral narratives can reveal important insights into the value systems of patients which, in turn, can provide insights into underlying motivators of, and barriers to, specific health behaviors.

Core narrative refers to the literary genre which underpins the patient story. A cancer patient, for example, may cast herself as a hero in the style of romance, confident in her abilities and determined to defeat an implacable and deadly foe. Or she may tell her story in the genre of tragedy, focusing on impending loss, dreams that will never be realized and the suffering of those she may leave behind. The difference in patient perspective revealed through the choice of romantic versus tragic narrative style is obvious. What is less obvious is that the patient’s core narrative often draws, either consciously or unconsciously, from a finite, culturally grounded repertoire of archetypal characters, clichés and symbols associated with each genre. Thus, in romance, the patient as hero may see her doctor in the stock role of the wise mentor – think Obi Wan Kenobi of Star Wars – who dispenses wisdom as he prepares his young charge for battle. A comic narrative may introduce a sidekick – think Sancho Panza of Don Quixote – whose humor and good nature make living with severe illness bearable. Once the iconic roles assigned to stakeholders in the patient’s core narrative are revealed, patient expectations of physicians, caregivers, family and friends can be understood at a deeper emotional level. Exploration of stakeholder shortcomings in living up to the demands of these iconic roles can offer guidance for improving patient-physician communication, helping families better care for the patient and making patient directed outreach more effective.

Identify important junctures

Insights from patient journey research help identify important junctures, sometimes referred to as leverage points or pain points, at which patient behavior and experience can be changed for the better. Patient journey research also seeks to understand the barriers and drivers of change at each of these points so as to inform the development of effective behavioral interventions. Identifying leverage and pain points and knowing how to impact them requires a deep understanding of both the outer and inner patient journeys. As described here, a narrative perspective offers an effective and comprehensive qualitative approach to developing a deep understanding of the patient journey in all its behavioral and psychological richness.