In 2019, Cambridge was named one of seven centres of excellence in radiation research by Cancer Research UK. At Cancer Research UK RadNet Cambridge, we are committed to patient and public involvement and engagement (PPIE).
We wanted to expand this across the workstreams and into our local radiotherapy department at Addenbrooke’s Hospital in Cambridge. After a good chat with one of our patient representatives, we thought the best way to get more people involved in radiotherapy research and PPIE was to celebrate the amazing work that patients and the public have done over many years to help shape the radiotherapy services we see today. Involving patients was the goal from the very beginning – we needed to hear the patients’ voices to celebrate them.
People joined the group for different reasons. For example, Neil said: “I wanted to be involved in the project so that I could help to promote the modern science of radiotherapy and how it can benefit patients.”
Beverly wanted to help others facing treatment, adding: “I feel more knowledgeable, more comfortable and I feel quite an advocate for helping people to feel the same. It was a way of giving something back that felt really important to me.”
And Caroline valued the opportunity to get involved, explaining: “Knowing that there was a way to make your voice heard and a way you can make a difference for other people was very empowering for me.”
We know radiotherapy can be scary for people and hope that we can relieve some of the anxieties patients have about it. Radiotherapy is not often spoken about in general conversation or discussed in the media so not a lot of people know what it involves.
There are a lot of outdated misconceptions and fears about radiotherapy. We know radiotherapy is a safe, accurate and effective treatment for many cancers and around 50% of patients will receive radiotherapy as a part of their treatment. Developments in technology and what we now know about radiotherapy have changed immensely over the decades – radiotherapy is improving all the time and it is important that it is better understood by the public so we can take research and practice even further.
We wanted to display this in the local radiotherapy department so a timeline was proposed as a way of highlighting the key moments when patient involvement and radiotherapy have developed together. Our aims were to provide more information on radiotherapy, promote patient and public involvement and create a bright and friendly display that would enhance the local radiotherapy department’s environment. The display is now mounted in Cambridge University Hospitals NHS Foundation Trust radiotherapy department, with all the online resources linked via QR code to the CRUK RadNet Cambridge website. It was important to us and the PPIE group to include our younger patients, which is why we worked with our paediatric play specialists to create a hide and seek game for children.
We successfully secured funding for the display through Addenbrooke’s Charitable Trust, CRUK RadNet Cambridge’s development fund and the local radiotherapy department. The support from all these stakeholders helped to create a truly collaborative project with patients at its heart.
If we can help just one person to feel a little better about having radiotherapy by providing information that will help calm their fears, we have created something worthwhile.
The goal for this project was to involve patients and the public from the very beginning. The display and associated online content was all made in partnership with PPIE. We are so grateful to everyone who gave their time and shared their knowledge with the project and who continue to want to be a part of the CRUK RadNet PPIE group. By listening to them, the project has evolved so much. We have had the privilege of listening to their experiences of radiotherapy and it is wonderful that some of them have shared this on our videos and podcasts.
We would love to do more community engagement and really break down some of the barriers to radiotherapy research and PPIE for groups that are so often underrepresented. We did our recruitment during Covid lockdowns, which made going out into the community almost impossible. In the future, we need to consider underrepresented groups, such as BAME and LGBTIQ+ people, and build relationships with the community to better understand how we can bring more voices into the narrative. Diversity of voices is key to ensuring we are developing radiotherapy research that matters to patients and the public, and we are passionate about making this happen.
Working in partnership with the PPIE group has been an absolute joy. All the members have had time to share ideas and everyone was given the opportunity to share their voice. The video interviews and the podcast series really highlight the patients’ voices in a powerful way.
Listen to our All About Radiotherapy podcast series
To watch our videos and see the digital version of the display, visit the CRUK RadNet Cambridge PPIE website
Header and teaser image: FatCamera/E+/GettyImages
UKIO Online 2020
How radiotherapy teams can improve the care of their patients outside of hospital