Working with the Crick on the UK’s first exhibition exploring cancer research
Over the last year, we have enjoyed working with The Francis Crick Institute, commonly known as the Crick, to support their first Patient Advisory Panel (PAP) as part of the UK’s first exhibition exploring cancer research, ‘Outwitting Cancer’. ‘Outwitting Cancer’ was due to open at the Crick in September 2020 but has been delayed due to Covid-19 so will open at some point in 2021.
All the PAP members have a lived experience of cancer in some form, whether they are living with cancer themselves, have cared or are caring for someone with cancer or both. The PAP has used this lived experience to directly contribute to, influence and feed into the development of the ‘Outwitting Cancer’ exhibition.
We wanted to share our experience of working with the Crick to support the PAP as it is such an interesting and important project.
Why the Crick engaged their first Patient Advisory Panel
The Crick has been running a temporary free public exhibition for several years 2019’s exhibition Craft and Graft looked at the day to day work of scientists at the Crick. For the 2020 exhibition on cancer, Outwitting Cancer, the Crick’s public engagement team felt that it was important to co-produce it with those who have had an experience of cancer, seeing as the experiences can be hugely varied and are intensely personal.
It has long been an aspiration at the Crick to work with patients to better understand the lived experience of some of the diseases that we work on at the institute, and our forthcoming Cancer season provided the perfect opportunity to do this. – Crick Team Member
The PAP’s exhibition developments
We were lucky enough to be the Crick’s partners for the PAP bringing our experience of patient voice. We facilitated 8 workshops, supporting the PAP to see, discuss and develop different aspects of the exhibition content and planning. The PAP’s views were listened to by the Crick team, the exhibition curator, those involved in design and marketing and taken on board to influence all aspects of the exhibition.
Our work with the Crick started in February 2019, where we looked to recruit 15 PAP members. We had a really strong response and found the most challenging part was working with the Crick team to narrow down the applicants to create the final group. We invited successful applicants to take part and everyone accepted. Our first workshops took place shortly thereafter in April 2019.
Developing the right language for the exhibition
The PAP’s role was to look at different aspects of the exhibition, this included the marketing around the exhibition, design and importantly, the content. A key area in which the PAP made an impact on the content is through the use of language and the tone of the language used in the exhibition.
“I have felt valued and appreciated by the process which has felt very empowering.” – PAP Member
Initially, some of the language used words like ’fighting’ or ‘invasion’, which some members of the PAP felt could be upsetting, especially for those who are living with cancer. This feedback was taken on and the curator listened to the PAP to develop a language guide and updating the themes of the exhibition to reflect this.
On reflection, our experience of working with the PAP cemented why co-production is so vital. We learnt that for those who have a limited experience of cancer, it was not necessarily obvious that some language could be emotive, but the PAP picked it up very quickly.
Creating reflection areas and collaborative Zines
The Crick’s team had been considering how to manage the emotive potential of the exhibition and so the Crick’s team decided to include a ‘Decompression area’. Their idea was that the area would be used at the end of the exhibition where visitors can reflect on their experience.
Part of this decompression area was to have a ‘Zine’ or self-published magazines. Here visitors could read the Zine, all related to cancer or the exhibition in some way, and the visitors could add their thoughts. Visitors would also be invited to take a Zine away with them. To ensure that the Zine was impactful, the PAP helped develop content for the Zine through a dedicated workshop with a Zine facilitator which also included Crick scientists in order to maximise co-production. This was a really constructive session where the PAP created their Zines as well as feeding into the content of the exhibition Zine.
A personal highlight from the PAP
I enjoyed the whole experience of working with the PAP but a personal highlight for me was the Science on Screen event, where a cancer-related film was shown, and the PAP members led discussion groups with attendees.
The PAP co-designed and co-produced the whole event. This started with them choosing the film, with PAP members nominating several films which were then shortlisted to 3. The PAP members went away and watched the films and finally selected ‘A Monster Calls’ as they felt it was an emotionally stirring film that had beautiful cinematography and dealt with cancer engagingly and respectfully, a difficult balance to strike. During the evening, the PAP helped with registration, led discussion groups and other participatory activities like the wishing tree.
“Being part in the PAP has enabled me to take something positive from my cancer experience and to hope that I can make a small difference to people’s perception of cancer.” – PAP Member
The Crick’s team worked hard to feedback how they have been using the ideas sourced from the PAP, so getting the opportunity to see the actual results of the PAP’s work at the Science on Screen event was particularly rewarding for me.
The Outwitting Cancer exhibition will now take place in 2021
The last official meeting of the PAP took place on the 4th March 2020 with the exhibition due to open in September 2020. As a result of COVID-19 crisis, the opening has been delayed until 2021. Despite this, we have kept in contact with the PAP member and we are looking forward to meeting them all, virtually, in September.
“It is so important that this process is meaningful and respectful, and Wendy and Tim’s expert and sensitive coordination of the Panel, and facilitation of the sessions, has been invaluable in achieving this. I have found it very powerful to hear the Panel members’ personal stories and gain an appreciation of the diversity of their experiences and viewpoints.” – Crick Team Member