Updated: Jan 22
It looks as though stories are everywhere nowadays. Within qualitative research, there is an increased recognition of the relative power of stories, because we relate to people experiencing things in a different way than we relate to numbers. Stories have a strong affective dimension: you ‘experience’ a story with the person telling it, engaging your emotions as well as your brain. We are far more likely to remember data in the form of a story. To make sense of our lives, we all engage in story-telling, too, whether on Instagram or down the pub: about ourselves, our experiences, the people we meet and the things we do. These are, of course, not entirely fictional accounts, but a conscious selection of the many and muddled ‘data points’ of life, often with a narrative arc with a clear beginning and an end, and more often than not organised around a problem that is overcome somewhere along the way.
Patients are no different in this, as Arthur Frank so memorably pointed out in the seminal Wounded Storyteller (2nd ed., 2013). Nowadays many patients blog, vlog or even write books to share their diagnostic and treatment journeys with others. They may also get invited to tell their stories at conferences hosted by pharmaceutical companies or contribute ‘lived experience’ to deliberations on a reimbursement decision on a medicine targeting their illness. From the very first encounter, usually when they first go to their general practitioner, they begin to share their story, sometimes in a great number of places (Van de Bovenkamp et al., 2020). This is especially the case for rare disease patients, as theirs is often a long road to diagnosis, followed by difficulties in accessing treatment. Along the way, some stories become public property, evoking a strong response from society. One example is baby Jayme, a Spinal Muscular Atrophy patient who, through crowdfunding, got access to treatment with Zolgensma in Hungary, nearly 1,500 km from his home in Rijswijk, the Netherlands (RTL nieuws, 2020), and who sadly passed away recently.
The increasing focus on patient engagement and involvement also comes from the policy side, with a steadily growing interest in qualitative data. Patients’ experiential expertise and knowledge are now arguably more valued than they used to be. At the same time, policy makers and regulators are not well-equipped to deal with these more heterogeneous types of information. It is difficult to weigh a patient’s lived experience and personal responses against an ‘incremental cost-effectiveness ratio’, which seeks to capture the lived experience of many patients, yet reduces these to a number (Mills & Hilberg, 2019) – especially when faced with that particular patient in the decision-making setting (Kleinhout-Vliek et al., 2021).
With so much official emphasis on qualitative experiential data, it is worth bearing in mind that sociology tells us that the setting shapes the input (see for instance overview in Petrakaki et al., 2018). Stories are highly contextual, as where you are and whom you meet influences the story you tell, and the result will be interpreted in different ways by different audiences. These acts of adjustment and reception occur both on a conscious and subconscious level, all of the time, throughout our lives. This does not mean that the content is less ‘true’ as a result, it only seeks to point out the interpersonal dynamics that go into the representation of individual experience, which can be due to the creation of different expectations, such as for instance those in a diagnostic encounter compared to an official ‘conference’ setting labelled ‘patient experience’, or a contribution to a committee deciding on medicine reimbursement. The question is, how are patients’ stories shaped by their setting? What considerations affect this process, which stories are apparently ‘allowed’ and which not, how are these stories valued (in research and in policy), and what effect may this have on decision-making? In an interdisciplinary strand of research developed in collaboration with prof. Hester van de Bovenkamp at Erasmus University Rotterdam, we seek to better understand these issues through observations and key interviews. This matters as it helps us to better conceptualise how social pharmaceutical innovation initiatives are influenced by and shared across a relatively wide variety of settings.
Frank, A.W. (2013). The Wounded Storyteller : Body, Illness, and Ethics. Second ed. Chicago, Illinois; London.
Kleinhout-Vliek, T., De Bont, A., & Boer, B. (2021). Necessity under construction–societal weighing rationality in the appraisal of health care technologies. Health Economics, Policy and Law, 16(4), 457-472.
Mills, C. and Hilberg, E. (2019), ‘Built for expansion’: the ‘social life’ of the WHO's mental health GAP Intervention Guide. Sociol Health Illn, 41: 162-175. https://doi.org/10.1111/1467-9566.12870
Petrakaki, D., E. Hilberg & J. Waring (2018), ‘Between empowerment and self-discipline: Governing patients' conduct through technological self-care’, in: Social Science and Medicine, Vol. 213, September 2018, pp. 146-153. DOI: https://doi.org/10.1016/j.socscimed.2018.07.043
van de Bovenkamp, H. M., Platenkamp, C., & Bal, R. (2020). Understanding patient experiences: The powerful source of written patient stories. Health Expectations: an international journal of public participation in health care and health policy, 23(3), 717.
RTL nieuws (2020). Hoe is het met baby Jayme? 'We hoeven geen afscheid te nemen'. Accessed on 16 June 2022 via https://www.rtlnieuws.nl/nieuws/nederland/artikel/5198170/baby-jayme-spierziekte-sma-behandeling-zolgensma-hongarije
Photo credit: Jamie Lopes (2019). People Raising Hands with Bokeh [Image]. https://unsplash.com/photos/0RDBOAdnbWM
Written by: Eva Hilberg, PhD and Tineke Kleinhout-Vliek, PhD