ENRICHEnabling Research in Care Homes
A Plea for Plain English
Sue Fortescue was an Information Technology manager in Brussels for over 20 years before retiring to the UK. Her father had vascular dementia, and her mother had Huntington’s Disease and the dementia associated with it. Both have now passed away. In retirement Sue joined the Alzheimer's Society Research Network and now plays an active role in reviewing research proposals and monitoring research projects.
Richard Feynman, the distinguished theoretical physicist and Nobel Prize laureate, once said:
‘Only when you can explain your understanding without jargon and in simple terms can you demonstrate your understanding. This is the work required to learn, and skipping it leads to the illusion of knowledge.’
So why is this use of accessible language important to research?
Those who have applied or are applying for research funding will be aware that the inclusion of a Patient and Public Involvement (PPI) component is one of the key criteria for success. The aim of PPI, as documented in the National Institute for Health Research (NIHR) Central Commissioning Facility Patient and Public Involvement and Engagement Plan 2019/20 is ‘to ensure that patients, carers and the public have a voice in how the NIHR works and that patients, carers and the public get feedback on how they have made a difference’.
In my role as a PPI contributor I have been involved in reviewing the PPI components of several projects over recent years. Both my parents had dementia and my father was in a care home for several years so I have focussed on projects in those areas. PPI can add significant value to a research project and so it is important to spend time thinking about how this will be carried out. It is of equal importance to give some thought to the language used in the proposal as those reviewing the application and monitoring the projects may have worked in an entirely different area. Therefore it is crucial that the language used is such that anyone can understand it in order to provide useful comments.
In my experience, despite the inclusion of ‘Plain English’ sections, research proposals are often littered with abbreviations such as ARC (Applied Research Collaboration) and ICS (Integrated Care System) and specialised terminology such as ‘randomised control trial’ and ‘context – mechanism – outcome configuration’ are mentioned without any contextual information. As a lay person, although I have an undergraduate degree and three postgraduate degrees, and have worked in Information Technology management for over 20 years, I have no knowledge of what these specialised terms mean. Although I am more than capable and willing to spend some time looking up the meanings via Google, it is important for authors to consider their audience. If the proposal cannot be understood by those carrying out the review it will risk being rejected, so it is in everyone’s best interest to write in a manner that is accessible to a lay reader.
The use of accessible language applies also to the documentation of research findings. When I became involved in supporting research projects as a lay member, through my involvement with the Alzheimer Society Research Network, I was amazed to see how much work was being conducted in academia that never reached the carers working in care homes and thus had little or no impact on processes and procedures. This is hardly surprising if, as is often the case, the findings are documented in language that is only accessible to academics and would certainly not be comprehensible to the majority of care workers or relatives of care home residents.
Research related to care homes and dementia is of great interest to many people outside academic circles. Much research in those areas is funded from the public purse and, it could be argued, should be accessible, in some form, to the public.
It is true, however, that those involved in writing research proposals, and journal articles to disseminate research findings, might not have had training in expressing complex concepts in accessible language. Whilst complex terminology might be appropriate for a small circle of experts, this restricts the impact to a wider audience. The NIHR provides useful guidance and other resources are provided at the end of this article. Perhaps universities could give some thought to including modules encouraging ‘Writing for a Lay Audience’.
This ‘Plea for Plain English’ is addressed not only to researchers submitting proposals or writing articles but also to funding organisations, academic journals, and all who are involved in research. Using ‘Plain English’ will not only help to get research proposals accepted but will also help to get research findings disseminated and implemented. This would be a win – win for everybody