ORACLE sets out stall for BDRF research strategy
BDRF has unveiled its research strategy in the above article for Colorectal Disease. The new approach enables us to make the absolute best use of donors’ money on behalf of patients & their families.
Our ORACLE process will drive decisions on which work we support in the coming years, laying the foundation for ‘genuine and integrated patient collaboration in defining and developing future research for bowel disease’. We now have a grant-making framework representing the fusion of patient and professional priorities, making sure we target the most important areas and make meaningful change.
The scope of bowel disease research is incredibly broad. Treatment methods vary from hospital to hospital and even surgeon to surgeon. It can be disorientating, consensus can seem impossible to reach, and charitable funding can seem to fall through the cracks.
BDRF undertook the ORACLE exercise to unite the people living life on the front line. The findings are now available in Colorectal Disease.
The article also describes how ‘traditionally, academics have defined research topics and designed studies without the involvement of those who have direct experience of disease and its treatment.’ In order to have a comprehensive strategic approach it was vital to break down this barrier.
To achieve this, we took the interaction between patients and doctors outside of a clinical setting, humanising it with informal and personal interaction between participants.
Surgeons present at the events described them as truly eye-opening, and it was striking that patient and professional priorities differed markedly.
Patients particularly identified the ‘need for better information about how to avoid stoma complications, particularly parastomal hernia and to be given to sufficient advice and support on discharge’. Subsequently, one of the trial groups present at the event received a £1,000,000 grant from the NIHR for their work on parastomal hernia prevention.
Having established our research agenda, it’s over to our supporters to ensure these problems are tackled. We have the tools and talent at our disposal to start making a huge difference to the lives of the patients whose priorities our research will focus on. But as the article says – more research is now needed to address those issues. These include treatment of increasingly common polyp cancers we currently know little about, better management of painful and distressing Crohn’s complications, and the urgent need for a standardised approach to rectal cancer biopsies enabling more personalised chemotherapy.
We are on the cusp of vital discoveries and huge leaps forward in treatment. The task now is to fund this work, designed and developed to combat the most urgent issues facing patients and their families.