The Co-design of Patient Information Leaflets – A Patient's Experience
- CanGene-CanVar
- Jun 30
- 5 min read
Blog post by Julie Young, Patient Reference Panel member.
In March of 2023 I agreed to Co-Chair on 2 meetings that were arranged by Kelly Kohut (WP4) so that we could explore the thoughts of patients as to how information leaflets could be better designed and distributed with the patient in mind.
The two meetings were on separate days and both included groups of both professionals and also patients who all shared one thing in common. They all had an inherited pre-disposition to cancer through a genetic mutation. The first meeting concentrated on patients who were carriers of Lynch syndrome genes and the second meeting was aimed at patients who carried haematological genetic mutations.
The aim from the start was to have patients agree to be part of the meetings and to review some previously selected documents on how leaflets were designed previously and also the ethical implications behind these. The meetings themselves really drummed down on how the patient felt about these documents but more importantly we wanted to know the patients personal experience including:
What leaflets (if any) they were given
What they felt was good or could have been improved in these leaflets
What a patient felt was most important in the content of a leaflet
How the leaflet was laid out, the grammar that was used and even the font and colour choices
We also wanted to find out from a patient’s point of view, when the best time would be to receive such information as timing can be critical at such a daunting diagnosis
We also took on board the comments of the professionals
How they felt best to deal with a situation like this
The ethical implications from their point of view
How important it was to deal with medical terminology and not to either give false hope or elevate a situation when that is not required.
We also heard from their point of view any patient comments they had taken on board and that were relevant to this research
We were fortunate enough to have a good selection of people who attended each meeting
Different ages, sex, religion, ethnicity and geographical locations and this helped a great deal too because not all situations were the same for many reasons
Our meetings began with introductions between everybody and also with some background information into the different genetic conditions we were looking at.
We had break out rooms so that we could allow more people to have a voice which makes it easier to gather more feedback and opinions and allows for those that are not as comfortable speaking in the larger group and therefore we got more honest responses and we also carried out Slido polls which gave people the opportunity to answer questions with anonymity.
Kelly Kohut also conducted a further 20 personal interviews with patients as part of her PhD research project.
What we learned
There was genuinely so much to be learned from the workshops and it was an excellent way of letting patients have a little input into the process and final outcomes of future leaflet design, which gives us, the patients, a sense that what we say is being listened to and also that it does matter and make a difference.
We found that amongst many things that patient care and pathways do differ in certain geographical locations which leads you to the question of why this is so?
We talked about when we thought was the optimal timing for receiving a leaflet would be
We found that each patient’s journey was very different
We discovered that in a leaflet patients preferred:
Something A5 in size
One larger leaflet rather than lots of smaller leaflets
Clear wording with less medical jargon so that everyone could associate and understand the information given
A section with contacts for further information and help
Signposting to social media groups and websites
Patients liked a question-and-answer format
Case studies and patient stories can be very helpful
It would be helpful to have links to advice about explaining the situation to other family members and children
They like diagrams because they are not only visual, they also split up the text making it easier to read
Patients didn’t like that they weren’t told of the possible outcomes of testing
They also didn’t like the fact that not all possible cancer risks were mentioned in leaflets they had received.
Patients were concerned about the lack of professional knowledge about genetic conditions and this might encourage further professional development
Many were not told about fertility issues and predictive testing and prenatal testing
My thoughts
It was an honour to be asked to help out with this project and the response from patients and professionals to help out really goes to show how committed people are to improve things for others, both in a professional capacity in clinic but also for the patient journey. It is so reassuring to be able to contribute to this and to hear so many people offering advice and their own opinion on a subject that can be difficult to navigate. I thought the options offered to people in order to join in the project were fantastic because so many scenarios were covered for a great variation of people from a large geographical area and from so many differing backgrounds. This meant that there was a really good response to the study and as a patient myself I find that so reassuring.
It shows that the patient voice does matter.
What we feel and what we want to say will be heard, however big or small that voice may be. Its not always easy to speak in a large room of people but in this instance, the use of zoom, breakout rooms and the Slido polls meant that nearly everyone felt they could contribute.
It’s nice to think that we can help not only with the genetic conditions that we studied here but also that the results of this study can then be transferred across other services too making it far reaching.
What happened next
Following on from this experience I was asked to speak at a medical conference in Vilnius in Lithuania. The EHTG or European Hereditary Tumour Group was an unbelievable opportunity for me. I won’t lie I was extremely nervous to speak here as this conference was attended by hundreds of medical professionals who were from all over the world. It was very eye opening and full of very rich information from people at the very top of their game and also from the top nurse specialists and geneticists and not to forget the medical students who are the up-and-coming talent of tomorrow and will be at the heart of what comes next.
I spoke alongside other patient reps from Belgium, Norway, Italy, Ireland and Germany to mention a few. Other patients from other countries who were fantastic to meet and all equally as dedicated to help improve outcomes and information for as many people as we possibly can, because together we can make a difference.
Both Kelly and myself spoke about the meetings we had held and the outcome of these meetings and the very rich information that came from them and it was very well received by a very kind audience (I had a lot of help).
It always amazes me the number of links in one chain and each one of them is as important as the other. Together we are far stronger.
I offer my sincere thanks to Kelly Kohut for inviting me to help out and all the help she has given me because I honestly couldn’t have achieved any of it without her.
We were given support and funding from the Cancer Research UK CanGene-CanVar programme and a grant to Kelly from the University of Southampton Higher Education Innovation Fund. The patient leaflet meetings were endorsed by the UK Cancer Genetics Group and the Association of Genetic Nurse Counsellors.
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