Bowel Disease Research Foundation (BDRF) has unveiled a revolutionary research strategy – with patients’ needs at its core.

Bowel diseases are extremely common but complex and diverse.

114 people will be diagnosed with bowel cancer in Britain on a daily basis and 1 in 20 people will be affected in their life time (1) while lifelong inflammatory conditions like Crohn’s disease and ulcerative colitis affect  more than 300,000 people in the UK. (2)

There has been intense debate over what areas of research are most important in tackling these problems, with the priorities of various medical specialties, charities and patients themselves somewhat blurring the picture.

Muddled approaches have slowed the advance of new treatments, and worse, patients’ voices have either been used as a rubber stamp or drowned out of the conversation entirely – until now.

The Bowel Disease Research Foundation (BDRF) wanted to be sure that its donors’ money was having the maximum effect in improving the lives of patients and their families.

The BDRF ‘Delphi’ project brought together hundreds of patients and surgeons, charities and advocacy groups with one bold aim – to single out the areas of most urgent and unmet need in bowel disease research.

Bowel Disease Research Foundation is now calling on people across the UK and Ireland to get behind the Delphi Project by making a donation to support this life-changing research.

They are also calling on businesses of all shapes and sizes to get involved – not just through fundraising but through collaborative strategic partnerships to further strengthen the impact.

The Delphi Project culminated in a list of 25 research topics considered the highest priority. They cover issues like how surgeons decide whether or not to perform a permanent colostomy and all the impacts upon patients’ day to day lives this entails. Or how bowel cancers picked up through national screening programmes are best treated, potentially enabling millions of patients to avoid radical surgery or recurrence of cancer.

BDRF’s CEO Peter Rowbottom said

“The Delphi project marks the beginning a new era of patients and surgeons coming together to create research. For too long patients have been presented with research studies and asked for their thoughts at the end of the process. We wanted to turn this situation on its head, with professionals designing studies that tackle problems based on the day-to-day knowledge only patients have.

It’s what BDRF is all about – we are a small organisation that is at the very front line of clinical research and we put patients at the heart of everything we do”

BDRF’s Patient Advocate Trustee Azmina Verjee said

Thanks to the Delphi project, BDRF-funded researchers across the land have begun searching for the next generation of gold-standard treatments; incredible discoveries are in the pipeline waiting to benefit tomorrow’s patients.”

And at difficult times, when my symptoms flare with no respite in sight, I close my eyes and hold that thought.”

 

Professor John Northover, Consultant Surgeon at The London Clinic and St Marks Hospital for Intestinal and Colorectal Disease said

“What Delphi has done is a revolution and I’m absolutely full of admiration for it – a very comprehensive and a unique way for a specialist association to develop high quality research into bowel diseases”

If you would like to register to take part in further patient or corporate collaborative research events in 2017 then please contact the office on the contact details below.

Glen Saffery – Coordinator gsaffery@bdrf.org.uk   or Tel: 0207 869 6946

Further Reading:

Use of a modified Delphi approach to develop research priorities for the Association of Coloproctology of Great Britain and Ireland

ORACLE sets out stall for BDRF research strategy

The results are in – biggest ever patient survey in bowel disease research!

My Bowels and Me – patient perspectives on bowel disease

 

References