These tips are for scientists who will be engaging with the public around the topic of cancer immunology and immunotherapy. The aim of these tips is to encourage researchers to have the confidence to talk about cancer immunotherapy with a wide range of audiences and have positive interactions in a context of public engagement e.g. during a science festival-related activity.
Top tips
- Be aware that everyone has their own personal experience of cancer. Immunology cancer research is dedicated to improving the lives of people with cancer and sharing scientific knowledge with the wider public is important, but we recognise that it can be a sensitive topic and many people’s lives are touched by it. Be prepared to have conversations on potentially sensitive topics.
- If someone starts talking about their cancer experience, practice active listening. Try to listen instead of thinking about what you are going to say next and pay attention to what they are saying. Listening can often be enough. Don’t feel like you need to have the answers, being empathetic is helpful.
- You are not there to give medical advice. Unless you are clinically trained, you should not attempt to answer clinical questions and should make it clear that you are not a medical doctor. You are there to give reliable information with as much relevance to the immune system as possible. Any questions asking for clinical advice should be acknowledged and pointed in the direction of appropriate help. If anyone brings up their own medical issues, you can suggest that they visit their GP.
- If someone asks about how to get involved with cancer clinical trials suggest they speak to their consultant, clinical nurse specialist or healthcare professional, who will be best placed to advise individuals if there are any current clinical trials that they are eligible to participate in. It may also be helpful to direct them to the NIHR website where they can find out about health and social care research taking place across the UK: www.bepartofresearch.nihr.ac.uk
- Language matters and different people can find certain words motivating while others find them upsetting. Try to avoid emotive words such as ‘battling’ or ‘survivor’ but instead use factual language such as ‘living with cancer’ or ‘having treatment for cancer’. Try to refer to “people/patients with cancer” rather than “cancer patients”.
- When talking about immunotherapy, don’t dismiss other standard of care treatments or refer to immunotherapy as ‘better’ than other treatments. You can explain how more traditional treatments, such as chemotherapy, work compared to newer immunotherapies but avoid discussing which is better. People with cancer will have treatment that is appropriate for their individual situation and immunotherapy may not always be the ‘best’ option.
- Use your interactions as an opportunity to remind the public about the importance of early detection and diagnosis. If cancer is detected at an early stage, before even symptoms appear, it is easier to treat and there is better chance of survival. Highlight the NHS screening programme for cervical, breast and bowel cancer and encourage those eligible to have their screening tests.
- Remain honest about the realistic timeframes involved in bringing immunotherapy treatments from lab to clinic to avoid giving false hope to patients.
- Be prepared to have more general conversations about immunology.
- Enjoy it! Sometimes engagement can also address subjects that people find hard to talk about. Balancing the fun side of public engagement with the difficult experiences of cancer is important.
Resources
You can find many cancer support charities that provide helpful information and resources, below are some recommendations to check out:
These tips have been written to help scientists when using our new interactive activities about cancer immunotherapy. The British Society for Immunology has developed a new selection of free public engagement resources about the immunology of cancer and immunotherapy.