Roger Wilson: Patients should be involved from the outset in creating plain English summaries of research papers

I am a writer and journalist. I explain things. I listen, I question, I check. I have been involved with cancer research as a patient for 20 years now. One of the challenges I constantly witness is medical researchers struggling with one of the basics of communication—explaining things simply—increasingly demanded by the call for plain English summaries of research.

Let’s start with some basics. To communicate effectively you need to recognise the difference between data, information, knowledge, and understanding. Common usage conflates the four terms and their separate and distinct meanings get lost. This has been highlighted during recent months by the way politicians have used and misused data related to the covid-19 pandemic. They deliver data when they need to deliver understanding, and miss out the two elements in the middle. The disconnect becomes apparent when they are questioned. They stumble, usually adding yet more data, seemingly unable to see the path to understanding. Their audience becomes confused, the communication fails because they do not recognise that data is barely comprehensible to most people who are unable for themselves to translate data into information which builds knowledge and creates understanding.

I along with many colleagues from patient advisory groups spend hours poring over the efforts of clever people who cannot explain complex issues simply. The tools available (see below) offer valuable help, but using them to get to a good summary of a research paper is only part of the solution. The advice focuses on issues like reading age, word length, use of technical terms, and being concise, etc. The structure of an abstract is good to follow but as a guide it needs care—abstracts are data dense and do not guarantee understanding. 

The right approach, in my view, is to draft the plain English summary before you even start to develop the research project. It will not be complete, probably more a statement of ambition than a summary, but there is more likelihood at this stage that it will be written in a way that almost anyone can understand it.

At this stage you have no data, no new information, you are not yet able to enhance the reservoir of knowledge, but you do understand what you are trying to achieve. If you capture a good plain language summary early, you can keep reviewing it, adding to it, rewriting it, and it can help you check your objectives, it evolves as the project develops, you use it to help acquire funding, to gain ethics approval, it is the heart of patient consent information, of press releases, and the final version accompanies the journal manuscript. The plain English summary is a living document, the final version will be very different, but its parentage should still be recognisable.

This approach forces you to use the understanding you wish to create to help you clearly explain your objectives and the practice you will change (the knowledge). The information which does that will become apparent in the analysis of the data you collect. The final summary which goes to the journal only contains the data which supports the information that builds knowledge and underpins the understanding which every lay reader will grasp. The data you use in the summary choose themselves, they are prioritised by what you need to communicate, not by your enthusiasm or what you want to say. Your focus is on what you need your audience to understand and how you get that message across simply and clearly. It is a logical chain which describes a circle built upon a starting point and end point of understanding.

This all sounds fine and dandy in theory. The truth is that some researchers are born with these skills, some learn them, and the rest have the need for these skills thrust upon them. But the goal is the same; creating understanding in a lay audience by controlling the chain from data to information to knowledge to understanding. The tools below all help with getting language and style right. Having patients involved with the study from the very early days onwards helps too, so they can take charge and responsibility for the evolving lay summary.

The Plain English Campaign is a useful starting point:

INVOLVE has a good advisory resource:

Consent Information advice is also valuable. HRA has a good version:

Roger Wilson was diagnosed with a soft tissue sarcoma in 1999 and has had six recurrences. He has worked with the NIHR, NCRI, NICE, Cancer Research UK and Sarcoma UK. In Europe he is active with EORTC, as chair of its Patient Panel, and he is Hon President of Sarcoma Patients Euronet. He was awarded the CBE in 2011 for his work as a patient representative in the NHS and cancer research, work which continues.

Competing interests: none to declare.