Public & Patient Involvement

John Clarke 3

AllCaN Oesophageal & PPI

PPI in AllCaN Oesophageal

The aim of AllCaN Oesophageal is to create a world-class network dedicated to improving outcomes for oesophageal cancer patients. PPI is essential for research to make patient-centered improvements to healthcare & advance education. To accomplish this in AllCaN Oesophageal, a PPI panel will represent the patient experience, will provide feedback on outreach activities and will help to evaluate the short- and long-term impact of the work delivered through the AllCaN Oesophageal programme. In conjunction with the PPI panel, AllCaN Oesophageal will ensure that patient voices have equal weight at all governance levels. The AllCaN Oesophageal team are deeply committed to working with those with lived experiences. Our extensive PPI panel importantly reflects those with lived experience of either Barrett’s oesophagus or oesophageal cancer. John Clarke was diagnosed with Barrett's oesophagus at age 33 and is a PPI representative for AllCaN: ‘I am unlucky to have Barrett’s oesophagus, but I am lucky to know I have it. Awareness is the key with any condition. The sooner found the better.’

John Clarke 1
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John Clarke 2

In preparation for the AllCaN Oesophageal consortium grant, the AllCaN Oesophageal leaders held a meeting in May 2022 with the AllCaN Oesophageal PPI committee to discuss the AllCaN Oesophageal leader’s ideas to help improve the management and outcome for Barrett’s and Oesophageal Cancer patients. All PPI panel members will work closely with AllCaN Oesophageal under different work tasks: Identifying & Prioritising; Design; Development of Grant Proposals; Undertaking/Managing Research; Analysing & Interpreting; Dissemination; Implementation; Monitoring & Evaluation of the research under each work package. Notably, this collaborative discussion helped the leaders and the AllCaN Oesophageal team shape the research projects presented in the grant and map out how the short- and long-term impact of this work could improve the lives of these and other patients across the Island of Ireland. The figure below shows how the AllCaN Oesophageal PPI group will integrate into the different stages of the AllCaN Oesophageal research programme.

PPI Image
AllCaN Oesophageal

If you would like to contribute to AllCaN Oesophageal as a patient representative, please get in contact with us.