Plain language summaries: how patients are helping bring the fruits of research to the public

by | 24 Jan 2019

Patients can play a key role in producing clear summaries of scientific papers. The result will make science more democratic and boost the impact of research
Scientific research is a multi-billion-euro global enterprise. However, the outcomes of scientific studies – many of which are publicly funded – are often locked up in complex scientific jargon, rendering it inaccessible to most citizens.
For medical research, in particular, patients have a clear interest in understanding research results. This has the momentum to build behind plain language summaries (sometimes called lay summaries): clear, concise descriptions of scientific research papers that can be readily understood by non-experts.
In late November, PFMD supported Envision Pharma in hosting a workshop in London to explore how plain language summaries can be co-created by scientists and patients. The one-day event looked at some of the practices, tools and templates used by leaders in the field in creating digestible versions of cutting-edge science.
One patient advocate who has been actively supporting advances in plain language summaries for several years is Antony Chuter, a Trustee and Chair of Pain UK and the immediate past chair of the Patient Liaison Committee at the British Pain Society. Antony has also chaired the Royal College of General Practitioners Patient Partnership Group and is the Patient and Public involvement lead and grant holder on a National Institute of Health Research Programme Grant at The University of Edinburgh and the University of Nottingham.
He has seen ‘lay summaries’ evolve rapidly in recent years and has been working with Envision Pharma medical writers to ensure patient-facing documents are fit for purpose. ‘There have been several factors behind the growing interest in plain language summaries,’ he told PFMD. ‘Patients want to understand research outputs, and some have been contacting doctors and researchers to ask for explanations of their work.’
Learning together
Another driver in the UK is that patients have been at the heart of projects funded by the NHS National Institute for Health Research. ‘The NIHR has said that all outputs should have a plain language summary because it’s public money.’
The pharmaceutical industry has also been leading the charge. Antony has worked with Envision in developing lay summaries and has seen now graphic design and multimedia approaches move the field forward. ‘We’ve been learning together how to improve plain language summaries – I’m sure the first versions we produced are not as good as the ones we are co-creating now,’ he says.
The key challenge is to make research truly understandable to a broad cross-section of the public – not just to those with scientific knowledge. In practical terms, this can mean avoiding multi-syllable words, long sentences and complex phrases which might be a turn-off for readers.
‘We are now using infographics to explain the complex methodology behind multi-arm clinical trials,’ says Antony. ‘And we can include phonetic audio of someone pronouncing the name of a drug or compound. This helps them if they want to discuss it with their doctor.’
How it’s done
The process can take time. Lay summaries can be written by researchers or, preferably, by professional medical writers. Patient reviewers like Antony can send written feedback and follow-up by conference call to work through what they liked about the draft and where improvements could be made. At Envision, Antony can work with the design team to make the final product as enticing as possible for the target audience.
Challenges can arise in publishing these summaries in journals if publishers stick to rigid criteria. For example, some insist on text-only summaries that are no longer than the typical abstract of a researcher paper. This, according to Antony, is rarely enough space to explain something complex in clear and simple terms.
One area of controversy in driving lay summaries forward is how much – if any – training patient reviewers should get. On the one hand, training can equip patients with the knowledge and language to understand complex topics. However, the downside is that they may quickly lose the naivety that made them ‘lay people’ in the first place.
‘There’s a danger of becoming too expert; of interpreting something as being clear to a typical reader when it’s actually quite complex,’ says Antony. ‘Training risks deskilling lay people by teaching them the language of research.’
He argues that rather than expecting patients to speak the language of science – helping experts to feel more comfortable – it is experts who should acquire the communication skills required to engage with citizens.
Research for all
Looking ahead, Antony is urging companies, publishers, the media and funding agencies to insist on and invest in plain language summaries of science. Even search engines have a role to play in ensuring the curious patients find lay summaries when they search for information about their condition. Publishers and research sponsors should also invest in search engine optimisation (SEO) to make patient-friendly content easier to find.
‘Research should be alive,’ says Antony. ‘It should be something everyone can access; it’s not just for researchers and clinicians in ivory towers who can then dish out their wisdom to the rest of us.’  
More on the topic: Plain language summaries: the industry view


Get the latest information on Patient Focused Medicines Development and stay connected with our activities.