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?’
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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.
