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. ↩
Where do patients find trustworthy and reliable information when they have a suspected adverse drug reaction? A just published paper, by my colleagues and I, gives some insight:
Seeking information when experiencing a symptom which could be a side effect from a medicine is a common strategy, potentially predicted using the SECope instrument, but not the MBSS. Doctors, regarded as trustworthy sources of information, are frequently used when such effects occur. However, their limited accessibility could contribute to high use of the internet as an alternative or additional information source. PILs were not considered as trustworthy by many people using regular medicines, but were nonetheless used frequently due to easy accessibility. Further work is needed to identify how these documents, ubiquitous in many countries, can be improved to increase trustworthiness. Reasons for not seeking information from pharmacists, despite their accessibility and trustworthiness, also need investigation.
One of the side issues in the paper is the confidence patients had that their suspected adverse drug reaction was caused by the medicine. Over 90% of patients were confident about the association, enabling them to take action, such as contacting their GP. The consequences of the adverse drug reactions included admission to hospital (8.8%) and serious enough to affect their daily activities.
This is yet another reminder of the harm medicines inherently hold, the importance of listening to patients, and the crucial role that providing accessible trustworthy information they can use to make decisions has.
O’Donovan B, Rodgers R, Cox A, Krska J. Use of information sources regarding medicine side effects among the general population: A cross-sectional survey. Primary Health Care Research & Development 2019; 20: E153. doi:10.1017/S1463423619000574
In April of 2000, a patient died following an avoidable presribing mistake. A once weekly dose of methotrexate was prescribed daily. A speaker at the Royal Pharmaceutical Society’s Conference last Sunday reminded me that the excellent Cambridgeshire Health Authority report of this incident used to be kept on my old website, since the original NHS website had disappeared.
For the purposes of keeping this important example in the public domain, I have put the PDF of the report on this site.
Photograph: “error” by strange little woman on stream. Attribution 2.0 Generic (CC BY 2.0)
Medicines shortages are more than the abscence of medicines for patients. Prescribers will prescribe alternative drugs, which may be less safe. As a brief follow-up to a recent post on drug shortages, I looked at the outcomes following a shortage of naproxen (a non-steroidal anti-inflammatory drug – NSAID) using Open Prescribing Data. It appears that patients have been switched, at least in part, to other NSAIDs that carry a greater risk of cardiovascular, renal, and gastric adverse effects. I have posted this in a BMJ rapid response to Ferner et al’s piece on drug shortages:
From September to December 2018, prescribing of naproxen in English CCGs fell from 581,927 items to 480,171 items (a 17.5% fall). In September 2018, naproxen prescribing cost £1,495,703 – by January 2019 it had risen to £9,206,903, despite reduced prescribing. Apart from these financial costs, there was a regrettable shift in prescribing, as the proportion of NSAIDs with greater risks of cardiovascular, gastrointestinal, and renal adverse effects rose. The “Number of prescription items for all NSAIDs excluding ibuprofen and naproxen as a percentage of the total number of prescription items for all NSAIDs” rose from 20% in September 2018 to 24% in January 2019.
Given the current problems with shortages, care needs to be taken when substituting medicines. Those who write guidelines, or issue prescribing advice, should consider second line therapies in the event that the first line drug is unavailable.
UPDATE: December, this is now a published letter at the BMJ
Photograph: “White round pills on blue background” by Marco Verch. Attribution 2.0 Generic (CC BY 2.0)
Pharmacists are involved in all areas of the development, manufacture, supply, and monitoring of medication. They work in pharmacies, hospitals, the pharma industry, medicines regulators, and increasingly, in the UK, in General Practice. They are ideally placed, and trained, to help reduce the major burden of drug-related harm caused by the widespread use of inappropriate medicines.
As part of the need to develop the evidence base for the contribution pharmacists can make in this area, including how pharmacists can work with patients, I am co-editing a special themed issue of the International Journal of Pharmacy Practice.
there will be a special issue of the IJPP in 2020, containing papers relating to the contribution of pharmacists to medication safety. We welcome submission of papers describing innovative approaches to enhancing medication safety, or rigorous evaluation of existing validated medication safety tools. Papers addressing the contribution of pharmacists to communication with patients and carers and multidisciplinary attempts to reduce the harms of medications are also encouraged. Please submit papers by 31st January 2020, using our online system, and use the tick box provided to indicate that you wish the paper to be considered for inclusion in the special issue. Accepted papers are available immediately on our web pages via ‘early view’. The print version of the special issue is scheduled for the second half of 2020.
The rest of the details of the call for papers can be found here.
Photograph by Ivan Radic. Attribution 2.0 Generic (CC BY 2.0)