COLO-SPEED Patient & Public Involvement & Engagement (PPIE) Day

4th April 2018

Colorectal Cancer Screening, Prevention, Endoscopy and Early Diagnosis

23rd April 2018 – Sign up by the 16th of April

National Institute for Health Research, Clinical Research Network Offices, Queen Street, Leeds – Meeting Room QS3 & QS4

If you would like to attend this meeting please email paula.madgwick@stft.nhs.uk

COLO-SPEED is a collaboration of doctors, researchers, scientists, patient advocate groups, stakeholder organisations, industry, public and patients working together to develop and deliver research focused on the prevention and early diagnosis of colorectal (bowel) cancer. The COLO-SPEED group have been invited to submit a proposal for funding to Cancer Research UK. The aims of the COLO-SPEED PPIE day are:

  1. To identify the best ways to ensure that patient and public voices are heard through every part of COLO-SPEED
  2. To strengthen the PPIE elements of the current COLO-SPEED funding application

What is COLO-SPEED?

113 people are diagnosed with colorectal cancer in the UK every day, and 44 people die. Many colorectal cancer and deaths are preventable. Survival rates for those who are diagnosed with colorectal cancer in the UK are lower than in many other developed countries, in part due to the fact that the cancer is more often diagnosed at a later stage here. We know a lot risk factors for the disease. Lifestyle – including aspects of diet, physical activity and obesity – is very important, but societal trends in these factors mean that the burden of colorectal cancer is expected to rise in the future. Genetic factors which increase risk of developing colorectal cancer have been identified, but we do not know the best way to use this information to prevent cancers or deaths. We have options for “chemoprevention” – i.e. giving medicines like aspirin to people to reduce their risk of developing colorectal cancer in the future – but this is not widely done.

Most colorectal cancers develop from pre-cancerous growths in the bowel known as adenomas or polyps. We have effective screening tools that can detect adenomas and early colorectal cancers. But, although screening programmes are in place, uptake is not high, especially in some population groups (e.g. men, lower socio-economic status, some ethnic groups). Adenomas and colorectal cancer can cause gastro-intestinal problems like bleeding. Almost 2 million people have such symptoms and are referred to hospital every year for endoscopic investigations. The overwhelming majority turn out not to have polyps or colorectal cancers. Endoscopy services are overwhelmed and struggling to cope and we need better ways to determine who needs investigation.

Most research focuses on treatment of advanced disease. To effectively prevent unnecessary colorectal cancers and deaths it is essential to shift the balance towards prevention and earlier diagnosis. This is what COLO-SPEED seeks to do.

COLO-SPEED will transform endoscopy units into colorectal research recruitment centres, building the world’s largest ‘experimental platform’ for colorectal cancer prevention and research. No patient will leave endoscopy without being invited to: participate in colorectal research (providing data and/or biological samples at that point); enter a trial; or provide consent for future contact about suitable research studies. This unique resource will enable efficient delivery of large scale cutting-edge research.

The COLO-SPEED “experimental platform” will provide a resource for clinicians, researchers, industry and (we hope) patients, to propose research studies and for these to be conducted rapidly using the available data and samples or agreed patient access. We are working with OpenLab at Newcastle University to develop an IT platform to host the information from patients who agree to take part in COLO-SPEED.

Initial Priority Areas

Three prevention and early diagnosis-related studies have been selected to be included in COLO-SPEED at the outset. The first one aims to develop a “risk stratification tool” to help determine which patients with symptoms are at highest risk of having polyps or cancer; this tool will be able to be used in routine practice to work out which patients need to be referred to endoscopy for investigation. The second one aims to test, in a randomised controlled trial, the effect of two common drugs in preventing adenomas and cancers. The third one will determine the best way to manage people diagnosed with an early form of colorectal cancer, known as polyp-cancer.

Plans for PPIE in COLO-SPEED

We will set up an overarching PPIE Panel/User Group to advise the project. With OpenLab, we also want to develop wide reaching strategies for PPI engagement and consultation throughout the programme making use of digital and patient friendly technology. We would like patients and public to be equal partners in COLO-SPEED including being actively involved in: prioritising research studies that will get access to COLO-SPEED; working-up project proposals so that they take the patient and public perspective into account; and identifying key messages from project results and helping publicise these.

You are warmly invited to attend this meeting and if you would like to attend please email paula.madgwick@stft.nhs.uk to confirm your attendance by 16th April. Please inform Paula of any dietary requirements.

Travel expenses will be reimbursed at standard class rates, please book advance tickets as soon as you are able to. Expense claim forms will be distributed in due course.

 

See Below for the Schedule

TimeSubjectSpeaker
11.00 – 11.05 Welcome and IntroductionsColin Rees and Bob Arnott
11.05 – 11.20Overview of COLO-SPEEDColin Rees
11.20 – 11.40Innovative digital strategies to capture data and engage with patients & publicPatrick Olivier (Open Lab)
11.40 – 12.00What are the key PPIE questions for COLO-SPEEDLinda Sharp / Mark Hull
12.00 – 12.40 Breakout session 1: How can we best get patient and public involvement in the COLO-SPEED programme? ALL
12.40 – 12.50 Feedback from breakout session 1ALL
12.50 – 1.00National Institute for Health Research perspective Jonathan Sheffield
1.00 – 1.45 Lunch
1.00 – 1.45 What do PPIE representatives at Cancer Research UK look for in a grant application?John Reeve
2.00 – 2.45 Breakout session 2: How can we strengthen the COLO-SPEED application from PPIE perspective? ALL
2.45 – 3.00Feedback from breakout session 2ALL
3.00 – 3.15 NIHR digital strategy and “App”Michael Mullone, National Institute for Health Research
3.15 – 3.30 Summing-up & Next stepsFarhat Din / Bob Arnott

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