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How can we share research together? A co-creation project to make scientific research more accessible

by Lisa Whittaker , Catarina Veiga | Analysis

28 May 2024

1 comment 1 comment

Artwork produced as part of a patient and public involvement workshop

In this mini-series of three articles, we share a recent PPIE project where we co-created an accessible information sheet based on a journal paper. In this article the PPI co-ordinator, Lisa Whittaker and one of the researchers, Catarina Veiga give an overview of the project and share their experiences of being involved.  

This entry is part 1 of 3 in the series How can we share research together?


Cancer Research UK actively involves people affected by cancer in their work. It is widely agreed that a culture of patient and public involvement and engagement (PPIE) is crucial to ensure research is patient-centric and impactful.  

But there is not a one size fits all approach to PPIE.  

Cancer research spans across various fields of study, and not all scientific advances necessarily change the patient experience.  

Academic research is traditionally produced and shared in ways which do not involve patients. Outputs are therefore often inaccessible to a lay patient and public audience, limiting their reach and impact.  

This is something we believe researchers and patients can change, together. 

By using a PPIE approach that directly involves patients during the process of conducting and disseminating research, we can work towards making research more impactful. 

Using this approach, we co-created and shared an accessible information sheet based on a journal paper.  

In this article we share the process and what we learned. We hope to inspire other researchers to do similar projects and come together with graphic designers, artists and importantly people affected by cancer.  

Our starting point was the question ‘how can we meaningfully work with patients to make research more widely accessible?’

Ask the experts 

We (Catarina and Lisa), together with Dr Adam Szmul and with the support of Cancer Research UK RadNet City of London, ran a focus group to explore how and where patients access information about research. Lisa recruited seven patients via the Cancer Research UK Patient Involvement Network who had previously undergone radiotherapy. In March 2023 we met online to discuss where patients currently access information about research and how they would like to see research shared.  

Catarina and Adam spoke about what scientific dissemination looks like, including a brief presentation about one of our research papers – using artificial intelligence to improve proton beam therapy delivery in children with cancer – and the traditional process for publishing in scientific journals versus mainstream dissemination methods such as media articles, blogs and social media posts. 

Patients spoke of their motivations to contribute to making future cancer patients’ lives better. They shared their experiences of having radiotherapy. Several were told radiotherapy was the “easiest” treatment but found it very difficult. Many had side effects later attributed to their radiotherapy. They also reflected on how challenging it can be to find reliable and trustworthy information, particularly while going through cancer treatment. 

The patients who attended the workshop were very interested in research and highly valued scientific publications.

I was very surprised to learn that patients do try and read scientific research papers, to gain information about their condition or treatment. Knowing that makes it even more important to create information sheets like this one, that can present the main points of a research paper in a comprehensible form.

- A researcher who took part in the project

They spoke about how they try to stick to reputable sources for information including charities like Cancer Research UK and Google Scholar. They all agreed that infographics with links to journal papers are an accessible, interesting way to share research.  

The fascinating discussion was captured in the artwork (below) by Jenny Leonard. 

An artwork highlighting how research can be shared with different groups
Artwork produced by Jenny Leonard as part of the first workshop discussion.

From idea to output: the path to co-creation  

We felt compelled to act on what the patients had told us and to try to make research more accessible for a lay audience. Our goal was to co-create a sister output to our research paper that made it more widely understandable and to learn how to incorporate PPIE as part of our research culture. 

We started with our recently published paper and worked with a smaller group of four of the patients, and graphic designer Gill Brown to co-create an accessible output.  

We planned three further online workshops each with a defined goal: 1) discussing the paper and identifying the key messages, 2) brainstorming how the key messages could be illustrated in an information sheet, and 3) revising and agreeing a final draft of the accessible output.  

This was very much new territory for all of us. We began in June 2023 and finalised the output below (see fullsize here) in early November, taking longer than anticipated for several reasons.  

An informational sheet highlighting how radiotherapy can be used to make radiotherapy in children more precise
The information sheet generated as part of the project

We had an initial plan but we had to adapt and compromise as we went. We needed time in between workshops to review and reflect on discussions and act on feedback from the patients. The production of the information sheet also took a bit longer, as it required more back and forth with the designer than we anticipated – and we had to fit this into everyone’s busy schedules. 

Originally, we wanted to co-create an infographic of our journal paper. However, we all agree that our output more closely resembles an information sheet or even academic poster. It has much more content than we initially planned.

As we discussed the paper with the patients, it became clear that we needed more context for a lay audience to truly understand the key messages of this research. And more importantly, it became clear that they wanted to know more!

This process challenged us to find a balance between scientific accuracy and accessibility for lay people. We distilled as much as we could by understanding the key messages from the patients’ point of view. This further highlights the need for more awareness of radiotherapy and radiation research.  

I really like it, it does resemble more of an academic poster than an infographic but it summarises and shares some extremely important research and to go from a 20 page journal paper to what we have is amazing.

- Feedback on the project output from one of the participants

The co-creation process and timeline 

The starting point was intimidating. The scientific paper was long and written for the highly specialised audience of radiotherapy physicists, computer scientists and engineers. It described in intricate detail complex methodology and experiments unfamiliar to lay audiences.  

To provide some direction, we shared a highlighted paper with the patients before the first workshop. In this way, patients had the opportunity to read a full scientific publication while also having some guidance on what the researchers thought were the most important concepts.  

What we realized during the first workshop was that we could not launch straight into a discussion about this specific paper without first explaining what radiotherapy is and how it works. It was surprising to learn from people with experience of radiotherapy how little they understood about their treatment and how much more is known about chemotherapy and surgery. This is something other patients have told us in previous projects including Radiation Reveal. 

From this first discussion we decided to break down the sheet into key messages/sections. During the second workshop, two weeks later, we talked about how we might use illustrations. This resulted in lots of ideas but also some outstanding questions and clarifications about the science.  

We had a gap of ten weeks before our third and final workshop. During this time the researchers and PPIE coordinator worked with the graphic designer to incorporate all the suggestions from the patients into an A3 information sheet draft that could be presented at the final workshop. It was important for everyone that the sheet provided clear information on radiotherapy and the motivation behind the research. We also wanted the information sheet to be faithful to what this research paper was about.  

We invited a clinician, Dr Pei Lim, to join our final workshop in September. Together we went through the draft information sheet, reviewed the language used and the clarity of the figures, and proposed changes to the layout. Further tweaks and changes meant the final version we were all happy to share was finalised in November. 

a timeline of the PPI project

What we learned along the way 

We realized more workshops and/or perhaps having a slightly smaller group would have been beneficial to speed up the project development. While we considered that the aim was clear at the start, establishing a tighter plan with clearer expectations and deadlines might be beneficial in the future.  It was no easy task to make sure that everyone in this diverse team understood enough of the science.  

Our approach of providing the full paper for the participants without some background information to read likely made some of the discussions very challenging and the co-creation process longer. We experienced first-hand how inaccessible academic papers can be. While having an extra workshop focused just on bringing more context is an option, we also learned a lot by going through these difficult discussions. It helped us to dive deep into the barriers of scientific writing, to identify and address key questions and misconceptions related to the research area, and to understand what aspects of the science were the most interesting to lay audiences.  

We were genuinely surprised by some of the aspects of the research that created interest and raised questions. Some of which were rather technical. Patients wanted to understand the different types of scans done during radiotherapy and questioned us about how AI works. They wanted to understand if the technology would negatively impact treatment times. So we argue rather than shy away from this challenge it is crucial we strive to make cancer research more accessible. 

Having the right team makes way for success. The input from the graphic designer, Gill, and Lisa were instrumental to the project’s success. They actively drove and participated in the co-creation process, contributing with perspectives that were different from but complementary to those of the researchers and patients.

Lisa had training and experience to support patients, but in hindsight it could have been beneficial to also ask a clinician to be present in all the workshops as the discussions can naturally drift into sensitive topics. Patients bring their lived experience and may have many unanswered questions about their own treatment. Including a clinician gives the opportunity to ask these questions before focusing on the goals of the PPIE project. 

In the future we want to initiate conversations with diverse audiences earlier in the research timeline (i.e., before a paper is published). We learned so much from this activity and wish for it to more than a ‘one-off’ activity. As such, a detailed PPIE plans involving one our patient representatives, Holly, was included part of a recently submitted research funding application. Fingers crossed! 

Profile picture of Lisa Whittaker

Dr Lisa Whittaker

Dr Lisa Whittaker is an experienced researcher and public engagement professional. Since completing her PhD in 2011, Lisa’s research, support and public involvement and engagement (PPIE) work has been focused on improving the lives of people affected by cancer. Lisa has worked within charities and universities. She is currently based at King’s College London supporting researchers in the School of Biomedical Engineering and Imaging Sciences and researchers funded by CRUK RadNet City of London.

Headshot of Catarina Veiga

Dr Catarina Veiga

Dr Catarina Veiga is an Associate Professor and lead of the Paediatric Radiotherapy and Imaging (PRIma) group at University College London. Catarina’s research intersects physics, engineering, and radiation oncology, focusing on medical imaging analysis and disruptive technologies to verify radiotherapy delivery and understand how radiation-induced side effects develop. Her research goal is to ultimately reduce long-term side effects from having radiotherapy during childhood. Catarina holds a BSc in Physics from the University of Minho and an MSc in Medical Physics from the University of Porto. Catarina was awarded her PhD in Medical Physics at University College London where she worked on computational methods to verify accurate radiotherapy delivery. Post-PhD, she has worked on projects related to radiation-induced lung damage before establishing the PRIma group with a focus on paediatric cancers.

    Comments

  • Patrick McGuire
    13 June 2024

    Excellent article. We need to do so much more to engage the public with research. We need much greater use of accessible lay language. We also must guard against the use of jargon and acronyms. Please no more ‘PPIE’ or jargon like ‘co-production’.

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    Comments

  • Patrick McGuire
    13 June 2024

    Excellent article. We need to do so much more to engage the public with research. We need much greater use of accessible lay language. We also must guard against the use of jargon and acronyms. Please no more ‘PPIE’ or jargon like ‘co-production’.

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Read our comment policy.