Today’s excitement was that I have been invited to attend a Cancer Research UK event in London. 10 other similar events are taking place around the UK simultaneously with the hope that together we (at all 11 events) will provide Cancer Research with valuable input with regard to more patient/carer engagement in research together with policy and campaigning.
In London there were approximately 100 patient/carers in attendance and I was really pleased to note that Cancer Research had been able to get a good balance of men, women, older, younger, working, not working and different stages of cancer diagnosis/treatment/remission. I’m always very aware that often the people who dedicate time to attend these events are often those who are no longer working and often older – we need to get more younger participants so that the views of young adults, new parents etc are also represented. But Cancer Research appear to have done this today!
The day’s agenda is focusing mainly on two main discussions (below) followed by a talk by Professor Bob Brown, Head of Division of Cancer and Chair in Translational Oncology at Imperial College. Then (thanks to technology) a message broadcast to all locations by Harpal Kumar, Chief Executive of Cancer Research UK.
The first discussion – Involving people affected by cancer in research. On our table it was a lively discussion leading to our facilitator writing super fast to take down all the notes. We divided the discussion into three main categories:
- What patients could be involved in
- Helping to train researchers in how to talk to patients
- What motivates people to be involved.
In summary (and believe me this post would be pages long if I put it all down), we said that we believed patients/carers should be involved in everything Cancer Research did. We asked that there should be more of an open dialogue between the organisation and patient/carers. We could help with reviewing documentation, website, information and also media. Don’t assume that patients won’t want to be involved, have an opinion or perhaps enhance the services and products. We advised that patient/carers can provide input at meetings, events and in person but also by email or via online surveys and forums. This additional way would allow people who aren’t able to leave the house to also provide their input. Could the researchers/scientists provide more information to the patient/carers about what they do? Perhaps tours of research facilities. Leaflets and newsletters with updates. We also asked if results could be published… even for projects that didn’t complete or failed. Collaborative working between the researchers and the users… think of it like translational research! If we can take research from the lab bench to the patient bedside then we should consider the same for patient/carer involvement.
We suggested that patients/carers who were advocates or past clinical trial patients could train utilise their experiences to train others. Nurses and doctors could understand the patient journey with regard to clinical trials. What they had been worried about. What could have been explained differently or in more/or less detail. What their experience was and why it was important to them to participate. We felt that these people could also be part of a video/tv campaign to educate the public about clinical trials. Not just the ones that include taking medicines or drugs but also those that mean tissue samples being sent from operations or perhaps completing surveys or research about side effects etc. So many people, until they need to understand, don’t come into contact with clinical trials and therefore many just remember the ‘elephant man’ trial a few years ago and assume this risk for all. Utilising the patient/carer message could dispel this myth and many more and encourage people to always consider a trial as part of their medical journey (if available).
Patient/carers input needs to be valued. After all, all these people were also someone before they were diagnosed or cared for someone who was. Maybe worth remembering that in one chemo ward an organisation may have all the skills they need for the whole project AND now they all have first hand experience too!
What motivates people to get involved? In the most part the answer is usually because they have been affected by cancer. However it can’t always be assumed that this is the case as often it may be more altruistic.
Everyone needs to be realistic and understand the requirements on the participants. Perhaps they have time but don’t have energy. Perhaps they have a great deal of time at the moment but know they have treatment coming up. Perhaps they want short term assignments or to help remotely. Ask. Ask the participant and also build rapport so that they don’t feel overwhelmed or ‘put upon’. We discussed that usually you get a better response and longer involvement.
The second part of our day regarded ‘Involving people affected by cancer in policy and campaigning’.
Something that was raised in the earlier part of the day was that patients and carers should be involved in deciding WHAT is to be campaigned for and what policies were prioritised. We felt it was a little patronising to be told what we should be campaigning for without knowing that there was sufficient patient/carer input at the start of the discussion. After all if it was something we were passionate about, would we not then put more emphasis on getting the message heard?
We asked for training, support and feedback for all participating. For many public speaking is part of their career however for some talking about something so personal can be difficult. Perhaps as part of the training use other patient/carers who have previously spoken publicly to talk about their experiences, how they overcame their nerves, what they felt got the point over etc.
We also felt that it was important for Cancer Research to publicise more the work they do with regard to influencing policy and campaigning.
This posting is only part of what was discussed and Cancer Research have also put together a blog with some more of the points raised. Do post any feedback or comments on their page.
In London, we were also treated to a performance by the Combination Dance Company – Code. Code are preparing a performance project that will be seen throughout the UK which will, through dance, words and music, tell a story about cancer and particularly research. Do keep an eye out for Code where you are. In the meantime you can follow their progress on Facebook and Twitter.