Tim is the Project Support and Research Officer at WSA Community Consultants. In this Blog, Tim reflects on working with Francis Crick Institute and the importance of co-production.

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


 

Vicky is the Evaluation and Training Manager WSA Community Consultants. In this Blog, Vicky reflects on taking the time to join the Community development Thinkery in the summer and consider her own practice.

Reflecting on our Practice – Listening, understanding and acting

It’s that time of year again and in writing our annual report we’ve had the chance to look back through the work we’ve been doing and reflect on our practice.

Whilst the past few months have gone in a flash in the summer I was able to join the Community Development Journal Thinkery. This was an event to bring together people from across the world to discuss the role and place of community development and community organizing in our world today. This opportunity came at a thought-provoking time for me, just beginning to return to work after taking maternity leave and provided an opportunity to reconsider and reinforce the impacts that our values make on how we work and the outcomes we aim for.

We considered the context we’re working within, the interesting times we live in but the opportunities this creates as well as risks. This struck a cord, bringing up the work by George Lakey, the sociologist, writer and activist whose unfaltering optimism is that times like this have the most opportunity for positive change and creating new equality. Whilst there are great risks (and a general feeling of gloom at times) we do ourselves a disservice to solely focus on these instead of considering the opportunities. This fits with much of our work, when we work with communities in flux or charities who have sudden opportunities there are inherent risks but also spaces for change open up. This year we have continued to see this with groups that we work with who have pushed barriers and made new ground.

Whilst this optimism was not felt by all during the Thinkery there was a discussion of the importance of conversations and the place that community development has for providing a framework and supporting some of these conversations to take place. These conversations are often fraught, this conflict is difficult but can be productive rather than divisive. We recognized that there are tools within community organizing to work with and express the emotion involved in these situations.

This theme of conversations continued during Pushpesh Kumar’s session later on in the day. His work has focused on Queer movements in Hyderabad and emphasized the importance of considering who was at the table for a conversation to take place. The importance of shaping a narrative and who we are allowing to do this is a key issue within all of our work and can be seen from discussions on who is on a steering group to who is interviewed for an evaluation.

One of our final speakers at the Thinkery was Adam Fletcher, who emphasized that all of our work is based in who we are. He used his work on the relations between young people and adults to discuss the power dynamics that often exist within our work. Differentiating between the ways of acting as; apathy (where there is no engagement or activity), pity (doing to a group with no engagement), sympathy (doing things for but with little engagement), empathy (working with people and where each acknowledges the other as a partner) but finally solidarity where it’s impossible to separate out the wants and needs of the two groups (you can see more at https://freechild.org/adult-perspectives-of-youth/ ).

In the discussions that followed we recognized that whilst solidarity is a lofty aim it is not always possible and that this should be recognised so that we do not aim to claim false solidarity. We all know the cringing nature of seeing someone who’s life experience is very different claim to understand someone’s experience simply because they were poorer for a summer once many years ago. There is instead a value of noting that you don’t have the knowledge but should instead listen to the person who does.

Several months have passed since the Thinkery which has left a great many thoughts echoing about what we aim to do within our work. This thinking has reinforced my practice, always wishing to work with those who commission us whilst recognising that ultimately the knowledge for change lays within the communities themselves if only we start those conversations, join the dots and take the chance to really listen.


 

Wendy is the Director of WSA Community Consultants with a background in youth and community work prior to that. Wendy recently returned from a trip from Geneva where in partnership with a colleague from Just Ideas she delivered a training the trainers’ course for people living with non-communicable diseases for the NCD Alliance.

Lived Experience Driving Change – The NCD Alliance: Our Views, Our Voices

There is a Ghanaian saying thatone broom can be easily broken but a group of brooms together is hard to break.’. This was shared with us by Chris K, an advocate for Non Communicable Diseases (NCDs) from Ghana as part of the Our Views, Our Voice training, the course was held in Geneva for people living with NCDs from 11 countries across the globe. The course participants comprised of two people living with NCDs from each country or region and one national or regional alliance member who would be part of the training team once back in their native country.

Along with Helen Garforth from Just Ideas, I was privileged enough to co-facilitate this fantastic and inspiring group of people for the NCD Alliance as part of their Our Views, Our Voices initiative.

Last year, Helen and I facilitated the workshop in Geneva for 23 people living with NCDs, training people in public narrative and mobilising communities who then went back to their countries and were involved in the NCD movement there. This year, the three-day programme focused on rolling out the skills learnt through training people to become trainers so they could go back to their countries and mobilise their communities.

Non Communicable Diseases include a whole range of conditions. The five most common conditions are cancer, diabetes, Chronic Obstructive Pulmonary Disease (COPD), heart disease and mental health, but there are many other conditions that are also non-communicable. They affect populations globally more than other conditions but yet have a pitiful investment which is an area the NCD Alliance is addressing and challenging on a global basis.

Our lovely group spanned 11 countries, with six country Alliances – Ghana, India, Japan, Kenya, Mexico and Sri Lanka and 2 regional Alliances – Eastern Mediterranean and the Healthy Caribbean Coalition. What was wonderful to see over the course was the strength that the group got from being together which made Chris K’s saying one of the mantras of the three days. As Haruko from Japan said:

‘Super empowered and energetic training. I was alone when I was diagnosed, but NOW I have company to live with. Our story has power to change the world.’

The honest sharing of lived experience was really striking. This included being stigmatised, not having a voice and feelings of being alone. Some of our group had been very alone and the fact that they were now helping others and working with their national alliances to advocate for change was not necessarily something they could’ve imagined being their story. We looked at the power of public narrative and used the Marshall Gantz theory to help the group think of their stories of self, us and now. This is explored in much more depth in the NCD Alliance’s publication on meaningful involvement (see here).

A lovely example of someone whose confidence grew over the few days was Jude from Sri Lanka. On the first day, Jude was very shy and didn’t want to talk in English to the group – he said he could understand English but wasn’t confident enough to speak it.  By day three he was sharing his story in English and led a great energiser for the whole group with some cool dance moves to ‘I like to move it, move it’! Jude is a young man with diabetes who felt excluded and alone when diagnosed as a child. He is now a leader of youth camps for other young people with diabetes and a role model. Jude also recognises the economic challenges people with NCDs often face if they are not able to work or have to balance caring for their condition with earning a living. He strongly supports young people with NCDs to develop their skills and help them to think about how to make a living. You can check out Jude’s woodwork business here.

What was lovely to see was the way the group came to know and care about each other in a very short time. The commonalities they found were amazing to see despite coming from very different countries and contexts and having a range of conditions. One exercise we enjoyed was using At My Best cards (which were very kindly discounted by the lovely people at  (At My Best). Using the cards we asked the group to work in pairs to share their stories and pull out key strengths both for themselves and their partner. The strength identified helped to reflect on the skills used to mobilise communities and drive change. This was hugely effective and helped some of the group reach another level of understanding.

I arrived home from Geneva feeling driven to support the 22 participants to be the best trainers they can be in their countries. Their passion, positivity and energy were a real gift to me over our three days together and each person made a massive contribution to the group. I feel lucky to have been given the chance to support this group and along with Helen, we will now see them returning to run training in their home countries. Working with the NCD Alliance, we will continue to support them and check-in through webinars and the sharing of the in-country evaluations.

There is synergy through much of our work as we often support communities to share lived experience; it is a key-value and part of our ethos here at WSA Community Consultants. It has also been a strong focus of our work on health and we are lucky enough to be working with a number of recognised organisations such as NHS England and the Francis Crick Institute, supporting them in delivering training around lived experience and Patient and Public Voice. Our more generic community work also looks to build on personal stories and lived experience, focussing on the assets and skills of individuals to achieve change.

Wendy Sugarman

Managing Director – WSA Community Consultants

Acknowledgements:

Thanks to Helen Garforth from Just Ideas for fantastic collaborative work; Dr Cristina Perez-Parsons, Manjusha Chatterjee and Luis Encarnacion the Capacity Development team from the NCD Alliance; our wonderful participants who we learnt so much from – Francis, Jaime and Patricio from Mexico; Rana from Lebanon, Enas from Eqypt; Chitrika, Thamilini and Jude from Sri Lanka, Yuko, Haruka and Hitoshi from Japan; Seema, Prachi and Jyotsna from India; Chris and Labram from Ghana; Jenna from Barbados, Diana from Guyana and Asha from Trinidad; Beatrice, Foulata and Patrick from Kenya.