Back in October of last year, I was in Sicily attending an international forum on improving patient safety. It seems a long time ago. Flying to Palermo. Sitting in a room with new people, talking. Shaking hands. Ordinary activities that seem risky propositions now.

However, the plan that arose at the meeting is more relevant than ever, as the debate on the safety of drugs for treating Covid-19 continues and the monitoring of the safety of potential vaccines will be under increased scrutiny.

The delegates came from varied backgrounds, with sometimes clashing perspectives. At times, it was hard to see how a consensus would be obtained, but an open debate did eventually lead to agreement on some core recommendations. As with most things, the clash of opposing viewpoints did strengthen those finally agreed on.¹

1. Raise public and professional awareness of the harms from medicines and devices.
2. Shift the culture within regulatory and health care management systems from one of secrecy to one of transparency.
3. Enforce existing effective regulations, revise ineffective ones, and implement effective regulations in those areas lacking appropriate regulatory infrastructure.
4. Transfer from industry to healthcare systems the responsibility for providing information and support to healthcare providers on the use of medicines and devices.
5. Encourage and enable prescription and use of medicines and devices that are appropriate and tailored to the needs of individual patients.
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7. Recognize case reports, including those written by patients, as a valid and important form of evidence of harms.
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9. Recognize the importance of patients and carers, as well as healthcare professionals, in studying all aspects of therapy.
10. Establish and continuously develop effective communication with patients and other relevant stakeholders about the potential benefits and harms of interventions to improve the basis for shared decision making about treatments.

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You can read more about this from Uppsala Reports and from the 国内iphone怎么上推特. There is also a 国内iphone怎么上推特, which covers the meeting.

In other news, I will shortly be starting a new twice monthly newsletter on drug safety issues. Many of these will touch on the recommendations from the 4Es forum. You can sign up here.

Photograph: Pharmacy, Trapani, Sicily by Anthony Cox

A couple of years ago we published a short paper on the use of Non Steroidal Anti-Inflammatory Drugs (NSAIDs) in runners, cyclists, and triathletes.¹ There was high usage of oral NSAIDs (70%), particularly in runners and triathletes.

We have now repeated this in recreational runners who attend ParkrunUK.² We found 80% of runners used NSAIDs. Runners who participate in longer event were more likely to use NSAIDs during events. You can read more at the open access paper, or in this complimentary piece at The Conversation.

Photograph: Start of the Paris Marathon 2011,  Av. des Champs-Élysées, by Anthony Cox

Covid-19 brought a hard stop to face-to-face teaching at Universities. The normal interaction between students and academics disappeared over the space of a week, as the black mirror of technology slid between them. Lectures, small group teaching, tutorials, laboratory sessions all gone. The entire University sector pivoted to remote teaching. After the great retreat to the virtual learning environments, the digital refugees looked around with fresh eyes at the tools lying around. What should we do with these?

If my own experience is anything, a great deal of hard work was done at short notice to make the best experience possible for students. However, it is fair to say that skills in teaching online are unevenly distributed across the sector, from Universities to individual lecturer level. Students’ experience, even with the best online materials provided would also have been mixed. Evidence shows that the multitasking digital native (homo zappiëns) is a myth.¹

Aside from the more general disruption and anxiety added to our lives these past weeks, for both teachers and learners, this abrupt change in provision of teaching was not easy. Students still value the everyday face-to-face interaction with other students and academic staff. Replicating this for potentially 18 months while social distancing measures are in place will be a key challenge.

Finding new on-line tools for teaching and innovation is the new Pokemon game for academics. I’ve become enamoured with Perusall myself. However, there are dangers in trying to innovate² in the face of a complete system change. Here are some of the thoughts I’ve been having about online learning during this change.

Make it coherent - Building a coherant course identity is more important than ever. No one wants their course to be “corporate”, but presenting a programme of study that fits together is more important than ever.

Less is more - The temptation to innovate with new tools is huge, but bombarding students with new tools in a random way will not improve the student experience. Use what you have well. Bring in new things in a consistent controlled way using pilots.

Build a community - As well as using our virtual learning environments for teaching and learning, we need to learn how to use them to build a sense of shared community of learning.

Don’t focus on the tool - Tools don’t replace human connection. How do we get through the black mirror to reach someone? How do we dissolve the screen in the higher education context?

Current students have the peer support they have built up over months and years, and established relationships with academics. They have networks. They have trust. This will have to built from scratch in less than ideal circumstance with new students. Remote teaching seems the wrong term.

If we focus being authentic in our interactions and use digital tools with empathy we can improve our chances of making those connections that matter in teaching. We need to be anything but remote.

Photograph: “Empty Desks” by Anthony Cox. Attribution-NoDerivs 2.0 Generic (CC BY-ND 2.0)

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

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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.

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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: 国内上twitter教程 by Bank of England. Attribution-NoDerivs 2.0 Generic (CC BY-ND 2.0)

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 2024; 20: E153. doi:10.1017/S1463423619000574