Before you create your research documents, consider these common pieces of feedback from our lay members:
1. What can be changed?
“They asked us what we thought of it and then told us nothing could be changed!”
The number one piece of feedback that we get from our panel members is frustration over being asked to comment on documents where nothing can be changed.
If you are submitting protocols that have already been to ethical review, validated surveys or other documents that are ‘fixed’ for whatever reason, please be clear about this and explain what you would like people to comment on and how you will use any feedback that is given.
If your documents can’t be changed, but you would still like public feedback on your project, please speak to the PPI Team.
2. What feedback are you looking for?
“Is this document for researchers or for patients?” “Why am I being asked for feedback on a statistical analysis plan when I know nothing about statistics!”
Most research documents can benefit from public review, but clear information needs to be given so that the panel understand what feedback you would like for each document.
Give context; explain where each document is headed, who the intended audience is, how it will be used and what your intended aims are. This is particularly important if you have submitted several documents with different intended audiences e.g. you might explain that your research proposal will be read by a funding body and reviewed by research specialists, a Patient Information Sheet will be read by participants and family members to explain the research process, and a lay summary may need to be read by the funding body, study participants and members of the general public visiting a website.
3. Is there avoidable jargon?
“Overwhelming use of jargon!”
Panel members understand well that medical research is a technical field, yet unnecessarily technical language frequently finds its way into lay summaries and patient documents. Describe medical, technical, and business terms in plain language and explain (not just expand) acronyms.
For example, “This study will investigate whether endoscopy (where a tiny camera is inserted into the body to examine internal organs or take samples) is effective at…” You may also wish to consider the inclusion of a glossary.
Also try to use the simplest word or phrase that you can wherever possible – instead of ‘requested’, try ‘asked’; rather than asking people to ‘make a decision’, ask them to ‘decide’. Avoid Latin terms like “per” and symbols that people may be less familiar with such as “‹” (less than) or “n=” (number of).
4. Are there unexplained words hidden in plain sight?
“Please explain [ambiguous generic medical/research word]” “I would have thought a positive test is a good thing?”
Panel members often comment that common words in the English language have specific meanings in science that members of the public may not be aware of. In some ways, these kinds of words can be jargon in disguise, because they are like everyday speech but different in the research context.
Examples we often see are intervention, randomised, significant, anonymised, bias, pathway, protein, theory, model, positive/negative, novel etc.
5. Are descriptions clear?
“There was no clear description… information was implied rather than stated.”
The lay readers have no background context for your work except for what you have given them, nor do they have an in-depth understanding of research protocols or processes.
Provide context up front to be clear in your objectives and introduction section. Describe clearly what will happen to data that is collected, how it will be used and analysed, what is involved in the research plan.
Also, use simple and explicit instructions where you are expecting the end user to do something (e.g., tick the box, sign the form, give/send it to etc). Try to keep sentences short wherever possible, as these are easier to understand.
6. Is key information consistent throughout?
There is a contradiction about [process/procedure/length of time etc.] between part A and part B. Which is correct?”
It is vital that all your documents are internally consistent and relate to each other, otherwise readers have no way of knowing what is correct and what is an error! Will there be three visits to the hospital or four? Will the data be stored for five years or ten? Will you have to wear a device, or two devices?
In particular, make sure that you are consistent in the terms that you use in the document. For example, if you have initially stated that data will be ‘de-identified’, continue to use this term, rather than referring to data as ‘anonymised’ or ‘pseudonymised’.
7. Would a simple diagram help?
“A simple diagram would have helped!” “The photos helped remove uncertainty about what was meant.”
There is a tendency to over-rely on (lots of) descriptive text when images/diagrams would be more accessible and equally appropriate.
Diagrams and images are particularly helpful when the procedure/device/intervention is difficult to envision for people who have never seen it before. Similarly, flowcharts, tables, and timelines can be an effective way to visualise complex protocols or research programmes.
Make sure you give plenty of thought to design to make sure it can be understood and make appropriate use of titles, figure legends and labels.
8. Could the document be shorter?
“This document was so long, I struggled to get to the end of it”
Many funding applications and protocols stretch to more than 20 pages, most of which are irrelevant to a lay audience – sections such as your technical abstract, analysis plan, researcher CVs and references should not be included for review.
Similarly, sections of protocols or applications which are blank or not relevant to your application should be removed before being sent to the panel.
In public facing documents, panel members frequently note that there is a tendency for researchers to put everything they can think of into a document to ensure that any consent obtained is ‘informed’.
However, it is important that documents contain what needs to be said as opposed to things you might like to include or trying to include absolutely every possibility. This ensures that panel members (and the future readers of your documents) give your research or research documents the attention it needs for them to understand it, and, importantly, to consent (if relevant).
9. Did anybody proof-read this?
“There were several typos throughout the document” “Some sentences were too long to be understandable” “Was this checked for readability?”
CUH PPI Panel members give their time to provide thoughts and opinions on research projects and should not be seen as a proof-reading service. Before you send your documents to the panel we strongly recommend:
- Proof-read your document: Check for any typos or sentences that do not make sense. It’s also important to think about whether all the information in your document is in the most sensible place. Has an explanation come at the first use of a term, or is it halfway through the document?
- A readability check is run on the text: This will highlight any over-long or complex sentences and grammatical issues. Examples of free readability checks can be found here (Hemmingway) and here (Readability Formulas) or via search engine. These scores will give you an overall impression of readability but are not a substitute for having it read by a human.
- Ask somebody with a fresh pair of eyes to look through your document: This could be another member of your research team or department for example. They will almost certainly be able to see
10. Related, but different:
““We’ve seen this before” “…a re-hash of topics already studied by health research”
Our panel is frequently exposed to studies that appear to the lay person as remarkably similar, and this echoes a wider sentiment (and misconception) about research being unnecessarily repeated, time and money wasted, and results not acted upon. Sometimes this is as simple as two (or more!) researchers from the same research group approaching the panel with their (understandably) related projects.
Researchers can help lay readers (and proposal reviewers!) better appreciate the uniqueness and importance of their research by clearly indicating how, where, and why the research is related to other similar projects, and highlighting what aspect of their work is unique and ground-breaking. For example, explaining that it is approaching an existing problem in a novel way, or trying an existing protocol on a different population/disease etc. When in doubt, spell it out!