Hello and welcome to CCLG’s brand new research blog!
I’m Ellie, and I’ll be taking you on a journey exploring the fascinating world of research. You will find out about our recent research projects, meet our researchers, learn how research works and everything else related to research.
Research is really about helping patients, families, friends - you. So, in celebration of our first ever research blog post, we will look at how you can impact research.
Researchers want to make sure that the experiences of families and patients are listened to and learnt from so that new research focuses on what matters most. There are a lot of ways in which families and patients can get involved with research, even if they don’t have a scientific background.
One way is through patient and public involvement (PPI). At the start of a research project, researchers will think about the questions they want their research to answer: What are the challenges? What do they need to fix or find a solution for? They will then ask PPI groups for their thoughts and ideas to check whether their questions are relevant to the needs of families and patients. This collaborative approach means that research can be targeted to where it has the most benefit to families and patients.
Dr Jess Morgan's 'scanxiety' project
One research example of how this works in practice can be seen in Dr Jess Morgan’s work, which looked at the benefits of routine scans after finishing treatment. The PPI group gave feedback to say that many families feel anxious waiting for scan results - a feeling so common that it even has its own term: ‘scanxiety’. This led to the research team thinking more about whether any survival benefits could be seen with regular routine scans when considered with the negative impact on mental health. This created the research question of ‘Does routine surveillance imaging after completing treatment for childhood solid tumours cause more harm than good?’
Dr Bob Phillips’ REFoRMS project
Another example is Dr Bob Phillips, who is currently researching treatment options for relapsed or refractory rhabdomyosarcoma. This is when the cancer does not respond to treatment (refractory) or comes back after treatment is complete (relapsed). Unfortunately, only one in five of these children can be treated successfully. This means that there are difficult treatment decisions for families to make; aggressive treatment that may not be successful, maintenance treatment to keep the amount of cancer at a manageable level, experimental treatments that may or may not work, or palliative care with no active treatment.
Bob’s team is talking to patients and families about how they make these difficult decisions to help them understand how decisions are made so that care teams can support families better.
The PPI group will also look at the information packs and consent forms to make sure that they explain the research clearly to participants of the study and are reasonable in their expectations. It is important that research studies respect their participants and consider the demands on their time, making sure they fully understand any risks and the potential emotional impact of their involvement.
These are all examples of how you can change the focus of research projects, how you can improve the experience of being involved in research for others, and how your lived experience can help doctors and care teams know how best to support their patients.
PPI and publishing
Another way that you can have an impact is on how the progress and findings of a research project are shared with the public. Most research projects will produce a scientific paper which is published in a peer-reviewed academic journal aimed at updating the knowledge of other healthcare professionals. For studies like the above, it’s important that these scientific results are also shared with patients and families, both to those who helped fund the research and to anyone who might be interested. Therefore, PPI groups can help in suggesting ways to make this content more accessible by looking at where to host it and in which format.
What can you do?
As a member of the prestigious Association of Medical Research Charities (AMRC), we are always keen to include people with lived experience in our research. We want a diverse group of people who have experience with childhood cancer who can help researchers address questions from all different perspectives. Currently, our PPI group reviews research grant applications submitted to CCLG, allowing parents to give important feedback to researchers and sharing their thoughts and experiences.
If you would like to be involved in helping to change the future of childhood cancer research, you can sign up to join the PPI Participation Group. It’s important that our research is guided by those who are affected by childhood cancer so we can help address the questions that are most important to them.
Ellie Wilkinson is CCLG’s Research Communication Executive.
She is using her lifelong fascination with science to share the world of childhood cancer research with CCLG’s fantastic supporters. You can find Ellie on Twitter: @EllieW_CCLG