Everyone Needs a Story: The Power of Narrative in Digital Health
10 September 2018
Posted by: Matthew Grek
Telling stories makes us human, and digital health needs to tell us a good story, argues Joan Cornet Prat, ECHAlliance Board Member and Director of the Digital Health Observatory.
Stories – narratives - provide a way of understanding our place in the scheme of things by structuring our understanding of events. Stories form a place and time in history, providing a sense of belonging, helping establish our identities.
Traditional narratives were firmly established—you took your identity from your locale, your clan, your religion. Your story fitted with your family and your country. These were master narratives that contained within them other, subsidiary stories that centred on more transient matters.
Master narratives began to break apart in the modern world. People began to migrate, religions unravelled under the onslaught of rational education and traditions frayed beyond recognition. The master narratives became stories of nostalgia, not our guiding forces that once determined both morality and reality. (1)
At the moment I find myself reading E.H. Gombrich’s ‘The Story of Art’, which is an exciting journey through the history of art. A key concept in art is the narrative of each work and the great leap from Egyptian to Greek art was the enormous ability of the latter to explain stories with an obvious impact on the observer. Without the tales of Homer, Sophocles, Euripides, Hippocrates and Plato, amongst others, Western culture would not have developed as it has.
Medicine and story telling
Medicine is “a science of uncertainty and an art of probability” (Sir W. Osler) (2).
The practice of modern medicine is the application of science, the ideal of which has the objective of ‘value-neutral’ truth.
The reality is different: practice varies widely between and within national medical communities. Neither evidence from randomised controlled trials nor observational methods can dictate action circumstances. Their conclusions are applied by value judgments that may be impossible to specify in “focal particulars”. Herein lies the art which is integral to the practice of medicine as applied science (3)
The practice of clinical medicine as an art and as a science
- Even “evidence based” clinicians uphold the importance of clinical expertise and judgement
- Clinical method is an interpretive act which draws on narrative skills to integrate the overlapping stories told by patients, clinicians, and test results
- The art of selecting the most appropriate medical maxim for a particular clinical decision is acquired largely through the accumulation of “case expertise” (the stories or “illness scripts” of patients and clinical anecdotes)
- The dissonance we experience when trying to apply research findings to the clinical encounter often occurs when we abandon the narrative-interpretive paradigm and try to get by on “evidence” alone (4)
It has been said that “we don't see things as they are, we see things as we are”.(5) Evidence-based medicine and the doctrines of standard empiricism offer a structure for analysing medical decision making only. They are not sufficient to describe the more tacit processes of expert clinical judgement. All data, regardless of their completeness or accuracy, are interpreted by the clinician to make sense of them and apply them to clinical practice.
Experts consider messy details, such as context, cost, convenience and the values of the patient. ‘Doctor factors’ such as emotions, bias, prejudice, risk-aversion, tolerance of uncertainty and personal knowledge of the patient also influence clinical judgement. The practice of clinical medicine with its daily judgments is both science and art. It is impossible to make explicit all aspects of professional competence. Evidence-based decision models may be very powerful but are like computer-generated symphonies in the style of Mozart— correct but lifeless.
The art of caring for patients, then, should flourish not merely in the theoretical or abstract grey zones where scientific evidence is incomplete or conflicting; but also in the recognition that what is black and white in the abstract often becomes grey in practice, as clinicians seek to meet patient needs. In the practice of clinical medicine, the art is not merely part of the medical humanities’, it is integral to medicine as an applied science. “True art is moral: it seeks to improve life and not debase it. It seeks to hold off, at least for a while, the twilight of the gods and us!” (6)
M Therese Southgate—physician and former deputy editor of the Journal of the American Medical Association may usefully have the final word:
"Medicine and art have a common goal: to complete what nature cannot bring to a finish … to reach the ideal … to heal creation. This is done by paying attention. The physician attends the patient; the artist attends nature. If we are attentive in looking, in listening and in waiting, then sooner or later something in the depths of ourselves will respond. Art, like medicine, is not an arrival; it's a search. This is why, perhaps, we call medicine itself an art." (7)
(Excerpt taken from https://mh.bmj.com/content/26/1/3)
Digital Health needs a narrative
We talk too much about technology and its benefits in medical practice. Sometimes we forget to be aware of the importance of the clinicians, physicians and nurses, among other health professionals and patient needs. We forget about the suffering of patients and their families. Our language is also confusing. What does Artificial Intelligence, Big Data and analytics, Precision Medicine, Patient remote monitoring, mHealth apps, Robotics, etc actually mean?
Digital health is an on-going revolution combining technology with personal health and genetic information to better improve the efficiency and delivery of healthcare and make medicine more personalized and precise. Or in the words of Paul Sonier, digital health is the convergence of the Digital and Genomic Revolutions with health, healthcare, living, and society. (8)
Healthcare is evidence based, and we can’t always provide practical evidence of digital technologies. At the same time health regulators are shy about deciding the rules, guidelines or scientific methodology to asses digital technologies. We are in a limbo.
In my view we need a new, more humble, approach to Digital Health:
- Working close to clinicians. Focusing in clinical specialities and their needs.
- Understanding better the patient and family journey through illness.
- Providing more clinical evidence of digital solutions.
- Raising decision makers (public and public) awareness of the need of digital health transformation of health organisations.
- Delivering strategies to fill the gap between health and social services.
- Enhancing health education and prevention with consistent digital technologies.
- Removing the jargon of technology, identifying needs and solutions, not only advertising gadgets.
- Facilitating practical training on digital health to clinicians.
- Collaborating with patients’ associations at regional, national and European level to have a common language and to deliver the right messages to ensure patients are aware of the benefits of digital technologies.
- Transferring knowledge from best practice on digital health transformation across borders.
Are these the correct priorities? I’m not sure. There is a need to build up a narrative where digital technology is achieving clinician’s confidence and patient trust. I cannot deliver this narrative alone, but I am confident this will happen if we are able to mobilise a wide community of experts, clinicians, technologist and patients to work on it.
Health is not only a science, it is art too. Technology cannot pretend to heal people. It can only help provide better healthcare services. We will always need the face to face conversations, the encouraging words and the advice from a nurse or a physician.
We need to remember the wisdom of our old friend Hippocrates:
“Wherever the art of medicine is loved, there is a love of humanity.”
(2) Sir William Osler, 1st Baronet (July 12, 1849 – December 29, 1919) was a Canadian physician. He has been called one of the greatest icons of modern medicine.
(3) Narrative based medicine in an evidence-based world. Trisha Greenhalgh, senior lecturer https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1114786/
(4) . (J Med Ethics: Medical Humanities 2000;26:18–22)
(5) Nin A. The diary of Anais Nin 1939-1944. New York: Harcourt Brace & World, 1969.Google Scholar
(6) Gardner J. On moral fiction. New York: Basic Books/Harper Collins, 1978.Google Scholar
(7) Southgate MT, Quoted in Downie RS, ed. The healing arts. Oxford: Oxford University Press, 1994: xvii.Google Scholar
(8) Definition of Digital Health: https://storyofdigitalhealth.com/definition/