A patients’ perspective: “Research should be done with patients, not to or for them” – Cancer Research UK

Final thoughts from the PPI project co-ordinator, Lisa 

Holly’s experience really echoes what we heard from the whole group. We evaluated the project using short surveys both immediately after the three workshops and then again once we had finalised the output. Group members had time to reflect and provided lots of constructive feedback. Despite the time taken and some challenges we all felt this project was a huge success.  

When asked what their favourite part of the project was, one participant wrote: 

“I’m still amazed that we managed to condense a very complex scientific paper into an accessible information sheet, and that everyone stuck with the process even though it took much longer that we had thought – everyone remained focused on reaching a good outcome.” 

Another participant said: 

“All of it! Enjoyed being part of a team venture and my contribution being listened to” 

Before the initial exploratory workshop in March, we could never have imagined the conversations we would have, things we would all learn and what we would create together.  

Sharing this project is an opportunity to raise awareness of meaningful PPIE. We hope to encourage other researchers to work in similar ways and to work with patients to make their research as transparent and accessible as possible  

One participant summed up the whole project perfectly: 

“I just think this was a great initiative, ‘translating’ an entire research paper into an info sheet is not something I would have even considered possible. I’m very glad that we managed to have a successful outcome. I think a lot of research scientists will be surprised by this as well and may see opportunities for doing something similar” 

CML Alliance
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