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Provide patient perspective on the national audit of pancreatic cancer management

Lay study title: A national study of the pathway to diagnosis and management of pancreatic cancer.

Institution: This study will involve multiple centres across the UK, but will be led researchers at the University of Birmingham.

About the study: Understanding how patient pathways in the management of pancreatic cancer are planned and delivered is vital. This study is a national audit of the management of pancreatic cancer. It aims to investigate and understand the various management options and healthcare pathways for patients that are newly diagnosed. This will include patients undergoing surgery, patients undergoing management of their jaundice and patients undergoing palliative management.

Type of opportunity: The study team would like patient and public involvement in the study. They have assembled an expert group of clinicians from a variety of medical disciplines, but have not, as yet, had a patient view of the project. We would like a small group of patients to review the aims and data that the study will collect.

When will this opportunity be recruiting/taking place?: The team are planning to start the study in early 2018 and would like to engage with a group of patients in October/November 2017.

What will participants be asked to do?: You will be invited to read and review the protocol and data set for the study, make comments and provide feedback.

Who can take part?: Anybody! Patients diagnosed with pancreatic cancer, family members and carers of those patients.

Who is conducting the research?: The study is being organised and run by a group of doctors from Birmingham. This includes trainee and consultant gastroenterologists and surgeons. There will be numerous hospitals around the UK that take part and these will each have a local team that identifies the patients and collects the data.

Who has reviewed the study?: The study has been supported by Pancreatic Cancer UK, Pancreatic Society of Great Britain and Northern Ireland and AUGIS. It has the support of the West Midlands Research Collaborative who have reviewed the project and are involved in its organisation. The study has also been reviewed by the Midlands Gastroenterology Society.

How will the study benefit people affected by pancreatic cancer?: The study will provide robust national data on the management and treatment pathways for patients diagnosed with pancreatic cancer. It is likely that the study will show significant variation in practice across the country and is the first step towards identifying best practice and implementing this across a large number of centres. The study will not alter the management of any of the patients that it collects data on, but will provide a snapshot of what is happening to patients on both an individual and national scale. This is information that we do not currently have.

Who to contact: If you are interested in hearing more about the study and assisting us with making the study relevant to patients, please contact Phil Harvey the study lead, or Siobhan McKay, Patient Engagement lead:

E: phil.harvey@doctors.net.uk / E: Mckay.siobhan@gmail.com