CSG and NCRI Consumer Forum: “Driving with Data – a Journey into Cancer Epidemiology”

On Monday 13th February 2017, the Cancer Survival Group (CSG) co-hosted a meeting with the National Cancer Research Institute’s Consumer Forum, for over 50 external invitees including patients, carers and others affected by cancer (also known as ‘consumers’).  After introductions from their Chair, Richard Stephens, the day began with a presentation from Dr Claudia Allemani of the research we have been working on since we last hosted such a meeting in 2012. There were also talks from Prof Bernard Rachet on how we use data, and from Prof Michel Coleman about the uses and potential misuses of cancer survival statistics. These were interspersed by two talks from members of the Consumer Forum: Margaret Grayson who spoke eloquently about how everyone can help by supporting the use of and easy access to the data researchers need and John Reeve who gave an insight into how rich data collected from patients with blood cancers in a particular area of England has been used to inform the care given to patients.

Audience participation during Margaret Grayson’s talk. Credit: Photographs by Simon Callaghan Photography

After a networking lunch, which included viewing of posters presenting CSG research, all participants took part in an interactive session entitled ‘the Dragons’ Den’, which involved presenting our work to the consumers. We split into five groups, each of which was led by a CSG researcher in a discussion of a particular research question. The researchers asked the members of the Forum for their input, advice and ideas around research that is ongoing or in planning: an invaluable source of information for us! It was also a chance for us as researchers to reconnect with the reason we do the work, and remind ourselves that patients are more than just numbers on a spreadsheet.

In the ‘Dragons’ Den’. Credit: Photographs by Simon Callaghan Photography

Across the day, participants were keen to emphasise the need for action: for research to inform and change policy, for everyone to “raise their voices” to work for easier access to data, and for patients to be at the heart of all the work we do. It was an invigorating and inspiring day, and we look forward to doing more similar engagement and involvement activities in the future.

Engagement and involvement in action. Credit: Photographs by Simon Callaghan Photography

See more photographs from this event here.

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