Embedding involvement and participation at Pancreatic Cancer UK

The challenge

Pancreatic Cancer UK had pockets of good practice in participation and involvement, although they were not widespread. There was a lack of a shared picture across the organisation of how they were currently engaging with their community, and how they could do so in future.

Long standing initiatives like a Community Forum had lost their sense of purpose and were leading to increasing disillusionment among participants. They were looking to better understand their status quo and reach a new strategy for how to work with people affected by pancreatic cancer.     

Our approach

We conducted interviews with staff across the charity and with people who had participated in the charity’s work to understand what was already taking place, where people saw opportunities for more meaningful working with the community and what barriers stood in the way.

We designed and delivered internal workshops, bringing together colleagues from different teams and members of the community, sharing early findings and responding to the question:

“How can we at Pancreatic Cancer UK unleash the energy and determination of everyone affected by pancreatic cancer to improve outcomes?”

Through this approach we aimed to both better understand the status quo of participation and to build a collective vision for the future.

Impact and learning

One of the ways we supported PCUK was to plot the ways they were currently working with the community along a spectrum of participation; helping them to see the ways in which they were most likely to invite involvement and where there might be gaps to move towards.

As part of this, we also helped the team to consider why, how and when to work at different parts of the spectrum; breaking down the benefits and skills required for co-design and co-production.

We also generated a vision for participation at PCUK, directly based on the words and ideas of those involved, and recommended the strategic steps to realising this vision.