Back in the 1960s I lost an Aunt before I was born.
My Aunt took an early oral contraceptive pill, and a fatal thrombosis followed. I was born shortly after, as was the data on the risk of thrombosis, some of which came from reports submitted to the UK’s spontaneous reporting system for adverse drug reactions - The Yellow Card Scheme.1
After becoming a hospital pharmacist, I worked at a regional Yellow Card Centre, and that began my research interest in the reporting of adverse drug reactions.
That’s a story, and stories are a powerful way in which humans share information and make sense of their lives.2 Stories can be true, but can sometimes not reflect full reality. Did my Aunt’s death lead me to be interested in adverse drug reactions and The Yellow Card scheme? That’s a story I could tell myself, but I can’t quite remember when I found out about my Aunt. I am fairly, but not absolutely, sure that my interest predated knowing this family history. Or had I perhaps forgotten it, and my new found interest dragged it from the recesses of my mind?
Whatever, the story of my Aunt, and the impact of the death on our family is a true story. Not a fiction.
So should we treat stories with respect?
I think so, and my work on the patient experience of adverse drug reactions underlines this, as does the value of patient reporting of adverse drug reactions to regulatory authorities.
An interesting article in the BMJ by Dawn Richards makes the case that patient experiences should not be called stories, on the basis that patient stories can be dismissed as being not based on evidence. She quotes a fellow patient advocate:
“…characterizing patient and caregiver interactions with healthcare as ‘stories’ is so frustrating. The experiences we describe are based on fact and we communicate them because we want to protect others from having similar encounters.”
It is suggested that stories in healthcare are seen as “fictional narratives” devaluing a person’s experience. Replacements for the word story are variously experience, perspective, fact sharing, knowledge transfer, and lived experience. The author suggests saying so long to “patient stories” and using the terms patient experience and patient perspective.
It’s well worth reading the piece, and it goes a little wider than the narrow aspect I am dealing with here, but I think the real problem is not the word we use to describe a person describing their health experiences, but the way that healthcare professionals listen to them. Whatever you call this, the risk exists that they will not be taken seriously. Lived experience or patient perspective can be dismissed just as easily as stories are, by someone not willing to listen.
Regardless of what you call it, most people will tell a story. That is how humans, social animals, communicate and process information. Before the written word, they were the way we made sense of the world, and passed on valuable information that aided survival. Stories were our first form of data storage across generations.
‘The human mind is a story processor, not a logic processor.’’ Jonathan Haidt.3
If you want to change someone’s mind, then stories can be more powerful than data.4 Emotion drives us, and our rationality follows along. When I tell students of the risks of intrathecal vincristine with data, it has far less effect than showing them an individual dramatised story of a real life case. The first will be forgotten, the second processed and remembered.
Rather than putting story on the euphemism treadmill 5, stories should be treated with respect. The word story itself can’t devalue patients’ experiences, it is the reaction of some healthcare professionals and organisations that does that.
Changing a word doesn’t change anything.
Changing the culture might.
Photograph: “Storyteller” by Bank of England. Attribution-NoDerivs 2.0 Generic (CC BY-ND 2.0)
One insider’s version of the oral contraceptive story in the 1960s is detailed in Bill Inman’s Don’t Tell the Patient: Behind the Drug Safety Net, 1999. ↩
One of the better books I read last year was Will Storr’s The Science of Storytelling, 2019. It’s mainly centred on story writing, but has plenty to tell us about what is important in spreading information. ↩
Jonathan Haidt’s The Righteous Mind: Why Good People Are Divided by Politics and Religion, 2012. ↩
This is not an argument that scientific principles should not matter. Some stories may find real causal effects, others might be co-incidence, but patient stories are part of the data. ↩
Euphemism treadmill is the process whereby a word that is considered a pejorative is replaced with a new word, which within a period of time becomes the new perjorative word, leading to another word having to be used. First coined by Steven Pinker in The Blank Slate, 2002. ↩