Plain English Summary Guidance

A plain English summary of a research proposal is sometimes referred to as a ‘lay summary’ and:

• Is aimed at an audience that is not expert in the ideas, methodologies, scientific or technical content described in the research proposal.
• Should:
  • provide a concise and informative way to share research proposals or findings with a wider, non-specialist audience
  • be written clearly and simply, without jargon, acronyms (abbreviations) and with an explanation of any technical terms
  • is not the same as a scientific abstract.

The National Institute for Health and Care Research (NIHR) states that a plain English summary is:

A clear, easy to read summary that is as jargon free as possible. It provides an overview of the whole of your research study that readers can understand the first time they read it.

“If the plain English summary is well written, somehow the whole application seems easier to assess – I have an idea of what it is about.”  Public reviewer

Plain English is a style of writing that the intended audience can understand after a single read. Well-written, Plain English should engage and inform an audience. It is about clarity of language and any other text that is not easy to understand. If technical terms are needed, they should be properly explained. When writing in Plain English, the writer should not change the meaning of what they want to say, but they may need to change the way they say it.

Remember: writing simple sentences does not always mean information is conveyed effectively. Simplify complex terminology using plain English explanations or everyday analogies.

Aims of the research:

• What is the researcher aiming to find out?
• How will patients, parent carers, members of the public and services benefit from the research – either directly or in the longer term?

Background to the research:

• Why does this research need to be done now?
• What is the scale of the issue? For example:
  • How many patients or members of the public are affected?
  • What are the costs to services?

Design and methods used:

• What design and methods has the researcher chosen and why?
• Who are their participants? (If appropriate)

Patient and public involvement:

• How have patients or the public been involved in developing this research to date or what plans are there to involve them?
• How will patients or the public be involved in the conduct/management of the research?

Dissemination:

Who will the findings be communicated to and how?

Some questions you can use when writing a plain English summary includes:

• Is it written in an understandable way, and could it be easily read and understood as a stand-alone piece by a lay audience?
• Does it aim to engage the reader whenever possible?
• Does it focus on the main concepts that are relevant to the lay audience?
• Is it balanced?
• Is it interesting?
• Does it avoid jargon?
• Are sentences kept short or have bullet points been used where appropriate?
• Does it use active not passive phrases, for example does it say ‘we will do it’ rather than ‘it will be done by us’?
• Have patients, parent carers, colleagues read a draft to check if anything is unclear?

The research:

• Does the context define the who, what, why, when, where and how of the research?
• Does it describe the research accurately?
• How have patients or the public been involved in developing this research to date?
• How will patients or the public be involved in the conduct or management of the research?
• Does it reflect the merits and caveats (specific conditions or limitations) of the research in an honest and objective way?
• Does it consider different ways to describe the science without the need for a complete summary of terms and definitions?
• When using scientific terms, does it define them and any other technical concepts used, avoiding further terminology when doing so?
• How will the findings be communicated and to whom?

Consider the following:

• On words: many words in general usage can have a particular meaning when used in a scientific context (for example, control, error and mutant)- will the audience understand the intended meaning and are the choice of words considered carefully?
• On using analogies or metaphors: the intended audience might have an easier time grasping the science if they can relate it to a common scenario or experience. However, analogies or metaphors shouldn’t take over and confuse, rather than clarify.

Remember: it is often good to return to a first draft after a few hours. With fresh eyes it is easier to spot opportunities for improvement – such as words that can be removed – that were missed the first time.

Dissemination

Sharing/communicating results/findings – how and with who?

Microsoft Word Editor

Hemingway Editor App

The Writer readability checker

Plain English Campaign

Mastering scientific language in scientific writing

Patient Information Sheet (PIS) Guidelines for researchers (GOSH)

Machine Learning to Improve the Identification and Treatment of Low Cardiac Output Syndrome after Paediatric Cardiac Surgery.

Heart abnormalities affect 1 in 100 babies born in the UK. Some of these abnormalities are managed with medication or a minor procedure, but one third need open-heart surgery involving a heart-lung bypass machine. This bruises the heart, making it harder to pump blood and oxygen to other organs causing possible damage. Despite frequent checking and testing, it is difficult for doctors to work out which children will develop organ damage after surgery. Doctors have different treatments to support heart function and oxygenation, but the best choice, dose, and timing of these drugs is still uncertain. We want to help children to recover as quickly as possible so they can get home and stay well in the longer term too.

The kidneys clean blood through a special filter, called the glomerulus. The glomerulus is like a coffee filter, which keeps important blood molecules, and excretes waste. Some children are born with a damaged filter and can’t clean their blood. This means they need dialysis or a kidney transplant. There is an urgent need to understand why this happens and develop new treatments. One idea is that damage to the kidney filter is caused by harmful substances circulating in the blood. If we find these, we will get better treatments for children with kidney diseases.

I will use a new laboratory technique to grow a human child’s kidney filter. The filter will be grown in three dimensions in a laboratory dish. I will expose this kidney filter to blood donated by children with glomerular diseases. This will show if the blood is harmful to the kidney filter. Next, I will determine which cells in the filter are damaged and how they respond. This will be done using a microscope. Finally, I will use a special machine to try to find the harmful substances in the children’s blood by comparing them with healthy children’s blood.

This project has the potential to identify harmful substances in the blood of children with kidney disease. It will tell me how these substances affect the kidney filter. In future work, I will try to protect the kidney filter by reducing these harmful substances. This will put me on track to my career goal of finding new treatments for kidney disease.

Hirschsprung (HIRSH-sprung) disease is a rare disorder of the bowel that happens at birth (congenital) and affects around one in every 5,000 babies.

• Normally, the muscles in the bowel squeeze rhythmically to push faeces (poo) through to the rectum (bottom).
• In Hirschsprung disease, the nerves (ganglion cells) that control these muscles are missing from part of the bowel.
• Without a nervous system to tell the muscles of the intestines what to do, they constantly contract, squeezing the intestines so that poo cannot pass through.
• The intestines above this contracted area swell with a build-up of poo, leading to a serious risk of infection and death if not treated.

Scientists are constantly researching how Hirschsprung disease develops and trying to find new ways to treat it. However, the results of this research are only available in scientific journals where usually you must pay to read it and it’s written in a way that most people won’t fully understand.

Additionally, scientists don’t get to hear feedback from the Hirschsprung community as to whether their research needs are being met.

Background

Losing a baby in pregnancy through miscarriage or stillbirth affects many families in the UK. The experience often has a profound emotional and physical effect on parents, with many wanting to know why their baby died.

Tests after the baby has died (post-mortem investigations) can provide information on why this happened in about half of cases, but these tests involve cuts being made to the body, which many parents do not agree to. This means that parents and clinicians could miss out on valuable information, which could:

• Give parents information for future pregnancies
• bring comfort in knowing why the baby died
• potentially prevent further losses.

My research has developed a new type of post-mortem scan, called Micro-CT (MCT), which gives detailed internal imaging of very small babies without making cuts to the body. Many parents now prefer this investigation over a standard post-mortem at our hospital.

What are the next steps?

My research already shows that there are particular groups, such as Black and Asian parents, or older mothers, who use our service less than others, despite having a far greater risk of pregnancy loss. This research tries to address whether they would particularly benefit from being offered this post-mortem scan, and how they can be better informed about it.

Step 1: I will co-produce an intervention (plan) with these under-represented groups who use this service less than other groups to see if this can help them understand their choices and improve uptake of less invasive autopsy in these groups. Co-producing with parents who have direct experience of pregnancy loss, through focus groups, will ensure that my engagement methods and approach is suitable and uses sensitive language.

Step 2: I will perform a health economic evaluation to look at the costs and benefits of imaging compared to other post-mortem investigations, to work out what additional information can be provided, depending on different patient groups.

Step 3: I will design an educational course for healthcare professionals to better understand the needs of parents during post-mortem discussions. By developing this with parents and a range of other experts and charities, I will help provide parents at this sensitive time with the information they need to make the best choices.

Why is this important for parents?

My work with bereaved parents shows that making a choice that is right is incredibly important but not always easy. They have welcomed my efforts to address how to engage parents in talking about pregnancy loss and designing the clinical service with parental needs at its core.

Under-represented communities

Bereaved parents have provided key direction by identifying the importance of including pregnancy loss charities in this work and when to contact parents following their loss. I will continue to engage with representatives from currently underserved by pregnancy loss research including Daddys with Angels and Black Baby Loss Awareness who sit on my Patient Advisory Group, to engage these underserved communities.

Why is this important for the National Health Service (NHS)?

By giving greater choice and more acceptable investigations for parents, this work is likely to increase the uptake of post-mortem investigations. This is critical to improving understanding of the medical reasons behind pregnancy loss, improving care and reducing emotional distress for parents, and in turn easing the financial burden to the NHS.

DNA is a molecule inside every cell of your body, made of a long chain of four slightly different smaller molecules. Like how a sentence is made out of letters, their sequence makes up instructions (“genes”) for how your cells should work. Changes to this sequence (“mutations”) stop the instructions making sense, causing disability or disease. Gene therapies correct these mutations.

One way to do this is by making a cut in the cell’s DNA chain near the mutation. The cell notices that the DNA has been cut and will look for another piece of DNA that matches one side to use it as a bridge to try to find the second side and repair the gap. If we add this bridging DNA ourselves, we can put the right sequence back in the middle.

• If a healthy person has a gene with this instruction: “This sentence means something”
• And a sick person has this mutation: “This senteans something”
• We cut their DNA: “This sent/ /eans something”
• And add our bridge: “sentence means”
• The cell repairs it to make: “This sentence means something”

You can write the same instructions with different DNA sequences. The sequence of the bridging DNA affects how effectively the cell uses it for this repair. There are too many different options to test one-by-one. To evaluate many at once:

• We will use many cells and give a mix of bridges: “This sent/ /eans something” “sentence means” “sentence means” “sentence means”
• And see which are incorporated most often: “This sentence means something”

The bridges compete to be used. Like how the fastest runners win a race, the best bridge sequences will be incorporated into cell DNA most often. We are initially applying this to the disease XLA, in which you can’t make antibody-producing cells to protect from infection.