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

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.

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.  

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!