The Role of Patient Information Leaflets in the Treatment of Patients

A first year medical school report by Kirsty Mackenzie, University of Dundee, written as part of a Student Selected Component (SSC) on Human Factors (March 2018). This is also available as a PDF.


Over the past century and particularly over the last few decades, there has been a huge shift in the way in which patients interact with doctors. In the past, patients were given very little information about their conditions or their treatments. Medicine was very paternalistic and there was little room for patients to question the doctor’s decisions or to make choices for themselves. The public had very little scientific knowledge and blindly agreed to treatments that may not have needed or wanted(1). This was not in the best interests of patients because they had no control over their own health and this must have left them feeling less content and more anxious about what they were going through. The old model of ‘doctor knows best’ has in recent times been put aside in favour of ‘person-centred care’. The Royal College of Nursing states ‘[Person centred care] means that the person is an equal partner in the planning of care and that his or her opinions are important and are respected(2).’ This term was first coined by the psychotherapist Carl Rogers building on earlier ideas proposed by healthcare workers. Further building on Rogers’ ideas, the psychiatrist George Engel promoted ‘the move from a medical to a biopsychosocial the move from a medical to a biopsychosocial model of health(3).’ His ideas have been widely credited with being responsible for the shift in the model of care.

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One step beyond: Mapping older tweets and retweets

Over the past 3 years I have been studying social networks for health (e.g. public health campaigns, clinical conferences). I have been collaborating with clinicians and analysts across the world in this work, publishing some of the outputs in peer-reviewed journals as listed below, studying the content, influencers, components of tweets that could influence retweeting, commercial influences in conference tweeting, responses beyond the hashtag, and looking at hierarchy of tweeting. Some of these have been published already – e.g. most recently a paper with Muge Cevik and David Ong, available for a few more weeks in free full text. Look out for details of the remaining papers over coming months. Summary of social media work - papersOne area that I have been keen to explore, but have not been able to until now, is mapping older tweets and retweets. Twitter provides access to tweets and retweets over the past 10 days. Sometimes a network will take longer than 10 days to establish, at which point the data become difficult – or expensive – to extract. This blog explains how to extract older tweets and retweets manually so that they can be mapped well beyond the 10 day limit, using NodeXL. I have used the example of #CwPAMS (Commonwealth Partnerships for Antimicrobial Stewardship) following a request by Diane Ashiru. I have illustrated this using 30 tweets first, and then the retweets that followed. It would be possible with patience and time to map all the #CwPAMS tweets using this method.

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Reflections on live tweeting social media analysis from #RCGPAC.

The Royal College of General Practitioners Annual Conference (RCGPAC) 2019 has embraced the use of social media to disseminate information to conference delegates and a wider audience beyond the conference hall. In an experiment at RCGPAC 2019, social media analysis was shared live from the conference hall throughout the conference, summarising the top content, identifying the main contributors and encouraging delegates to use the conference hashtag (#RCGPAC) to aid identification and dissemination of tweets. This idea emerged after an analysis of tweeting from the 2018 conference showed that a substantial proportion of tweets had omitted the official conference hashtag and were therefore less likely to reach their intended audience. Throughout the conference I shared social media analysis in a tweet thread and an ongoing Wakelet summary capturing the most popular tweets. This analysis has, in turn, fed into GP Online articles.

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Have we passed “peak tweeting” at medical conferences? (and other final reflections on social media analysis)

Conferences are an important way of sharing new medical and scientific knowledge. Twitter is an important way of summarising and sharing information from conference. This blog sets out to answer the question: “Have we reached peak tweeting at medical conferences?”. Popular social media tools produce quite misleading results, combining tweets and retweets, tweeters and retweeters, reporting potentially huge audiences based on questionable assumptions. Instead, this analysis uses raw data, breaking down results for tweeters and retweeters. It reports on 3 years of tweeting (2016-18) about four conferences (two public health, one anaesthetics, one quality improvement conference). The answer to the question whether we have passed peak tweeting is: “It’s too early to say whether we have passed the peak, but we quite possibly have, and conference tweeting is certainly evolving”.

Now of course 3 data points do not demonstrate a trend: you need 10-12 points or more for a run chart. Nonetheless, it is of interest that compared with 2017 there were fewer people generating original content at each of these medical conferences in 2018. These four conferences had quite different contributors and audiences, but the findings are consistent. Perhaps the pattern is real, and reflective of wider changes in conference tweeting. The number of tweets also dropped overall, but that may be explained by an increase in number of characters allowed in a tweet (from 140 to 280, November 2017). There was also less retweeting between 2017 and 2018 for three of the conferences.

Nonetheless, there is great content out there, and conference tweeting is maturing, and is likely to continue to evolve. We see the emergence of rapporteurs, specifically setting out to record the conference proceedings in imaginative ways. The Intensive Care Society State of the Art conference is leading the way in this area, and Helen Bevan and colleagues at NHS Horizons continue to generate fabulous content in their general and conference tweeting.

I also highlight that there are some limitations to current social network analysis:

  • Reports of conference audience/ reach on social media (Symplur, Twitonomy, Followthehashtag) are typically wildly optimistic and should be ignored. Their reports on influencers are potentially useful, but should be interpreted with caution.
  • Replies that do not use the conference hashtag are not captured, and sometimes include rich information. This requires more sophisticated tools and analytical approaches adopted from qualitative research methods.
  • Retweets are under-represented in NodeXL reports, and this can sometimes result in very odd results.

That’s me signing out of social media analysis for the time being. I’m off to retrain as a GP, returning to a clinical training grade for the first time in almost 20 years.

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Communication in a complex world – perspectives for Public Health/ NHS teams

Recently we had a discussion about communication in one of our teams. It’s a regular bugbear in any department:

  • Do we miss important messages in the dozens or hundreds of emails we receive in a day? (Disclosure – I have switched off emails when preparing this blog, so I can concentrate)
  • How should we manage circulars? (When I started work we used to have a paper system with sign off sheets that took many months to circulate around even a relatively small department. While we don’t have paper circulars any more, we still have plenty of emails with links to reports, conferences, consultations, and it remains difficult to keep on top of all this information)
  • Are meetings a waste of time? (They don’t need to be, but frequently are, usually because of problems with communication. Well described by Guy Browning).
  • How do we update colleagues about our work (i.e. internally)? (There are lots of different approaches – weekly information exchange, huddles, notice boards, posters, and of course quarterly and annual reports for corporate objectives)
  • How do we communicate with the outside world (i.e. externally)? (Many public services still don’t even have an up to date website, let alone a blog or social media feed; also peer reviewed journals, freedom of information requests, public committees and other forums).

A group of 3 team members met to discuss options. We weren’t all sure why we were there as the meeting invite hadn’t given context, or if it had it was hidden away. At least had managed to arrive, on time, with only one person missing. We started to explore options. In the spirit of better communication I have written up the meeting as a blog that can be shared on social media.

This blog is also available as a PDF to download.

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Who sets the health agenda in the UK and globally? An exploration of the early #FakeNews era

It is important for healthcare workers to understand how health news is reported. Social media provides ways to understand who makes and shares health stories, the potential audience, and the stories themselves. Back in January 2017 Prof Chris Oliver and I prepared a research paper on this topic which we submitted to two international medical journals in February and March 2017. It was not accepted for publication – perhaps it was too early for this important topic.

I came across the paper again recently when working through files as I prepare to move job (February 2019). The timing of this analysis – just at the point that Trump acquired the keys to the White House, and just when Chris and I were trying to work out what social network analysis reports could tell us – makes this a potentially important piece of work, so Chris and I have decided to share the paper in a way made possible by social media – a blog. Download the full paper here.

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Monitoring health related activity on Twitter: Tips for individuals, organisations, campaigns and conference organisers

Over the past year I have been learning and adapting methods for studying and summarising social media activity around health conferences and awareness campaigns.

This blog ties up that work, bringing the key pieces of work together in one place. My hope is that other people and organisations can use these techniques to plan, monitor and evaluate their own social media activities.

I am taking a sabbatical over the next few months, returning to the front line of clinical work in a care of the elderly unit in a large teaching hospital. I will not be able to extract and analyse tweets between April and July (inclusive). I will continue to monitor selected campaigns that relate to the clinical attachment (eg #EndPJParalysis and #EndPJParalysis which recently announced a 70 day campaign, beginning 17 April 2018).

This blog lists the main learning points from my activities over the past year, with links to the relevant blogs.

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How to run social media for a health conference: planning, tweeting and summarising

This blog takes a real life example (the Royal College of Physicians Edinburgh Public Health symposium 2017 – #rcpePH17) to illustrate ways to use social media in planning, running and summarising the outputs of the conference. You can also read a PDF version of this blog. Read a more recent application of some of these techniques to study infectious disease conferences in a Media Watch article for Lancet Infectious Diseases (February 2018).

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Social network analysis: quirks, pitfalls and biases

This is the latest in a series of blogs exploring the use of social media in public health and healthcare. The blogs have used social network analysis to study awareness raising campaigns (#VaccinesWork, National Clean Air Day, Antibiotic  Awareness Week 2016), conferences (European Public Health conference 2016, Quality2017), and key influencers (exploring whether the 85:3% rule applies to tweeting about health and healthcare).

You can also read and download the blog in a PDF.

This blog attempts to share some key methodological pitfalls in planning, conducting and sharing the results of a social network analysis. It is structured around 5 main ideas:

  1. Finding a needle in a haystack
  2. Filtering out the minnows and sticklebacks
  3. Working out the size of pond for the big fish
  4. Slicing out the spam
  5. The ones that got away – and how to include them in the final analysis

The work has reminded me of work on cell culture when I was a medical student: I worked in a lab in Dallas, Texas, for 4 months November 1994-February 1995, studying adrenal tumour cells. This was my first time working abroad, and I was a little star struck, working in Parkland Hospital, famous as the hospital that treated JFK on 22 November 1963, and home to Nobel Prize winners including Alfred Gilman. My research did not reach such heights. Results were disappointing and unpredictable, week after week, and I was running out of time. Research is marked as much by its “failures” as its “successes”; both are an essential part of learning, though the stumbles are shared less than the leaps forward.

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Some thoughts on digital innovations in Public Health

Between 25 and 28 January 2018 thirty teams of healthcare workers, tech specialists and entrepreneurs will work together to develop new digital innovations in Public Health in a Product Forge hackathon (follow the tweets over the weekend using #PublicHealthPF). I have been asked to provide some thoughts in introduction. Preparation will be important for all participants, so here is my initial advice under 4 headings. You can view the presentation that I have produced for the event here (I also plan to record this as a short “film”).

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