OESOPHAGEAL CANCER PRIORITY SETTING PARTNERSHIP(PSP)

Make your voice heard

Tell us what matters to you

Help us set priorities for research on oesophageal cancer

Click here to take our survey: https://www.surveymonkey.com/r/OesPSP

 

WHAT IS A PSP?

What would you like researchers to find out?

 

Oesophageal cancer is an uncommon disease and there are many aspects of the condition that could benefit from more research. This is a project to identify the top 10 research priorities for oesophageal cancer. We are asking people diagnosed with oesophageal cancer, their families and the professionals working alongside them to complete a survey telling us about what they would like researchers to find out about oesophageal cancer.

 

Who can take part?

We would like to hear from you if you are or have been:

  • A person who has been diagnosed with oesophageal cancer

  • A family member, carer or supporter of people diagnosed with oesophageal cancer

  • A professional who works with people with oesophageal cancer in the health or community setting.

 

How can I take part?

You can complete the survey online at https://www.surveymonkey.com/r/OesPSP or you can contact us to receive a paper copy of the survey in the contact section below. 

What is the survey about?

This survey is about your experience of oesophageal cancer. It is about finding out what future research should be done to focus it on what matters to you.

It is your opportunity to tell us about what questions about oesophageal cancer you would like answered by research.

 

Your questions can relate to anything that you choose. Some areas you might want to consider are questions related to :

  • Causes of oesophageal cancer

  • Identifying or diagnosing oesophageal cancer

  • Preventing oesophageal cancer

  • The effects of oesophageal cancer on everyday life (work, relationships,health and wellbeing)

  • What helps treat oesophageal cancer (interventions, therapies, treatment, care, supports)

  • Or anything you would like to know the answer to.

 

You will be asked to provide us with a maximum of 5 questions. They do not have to be in order of importance.

 
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OUR PSP

Bringing Change

Our PSP provides the platform for not only healthcare professionals but also patients and carers to have their voice heard in the discussion to  identify the TOP 10 evidence uncertainties or unanswered questions in the field of Oesophageal Cancer Research. The outcome of this study will serve as a guide for future researchers to focus on answering these unanswered questions in research. Your input will help us shape the direction of future clinical research on Oesophageal Cancer.

 

JOIN OUR SURVEY

FAQ

Helpful Information

What is Research?

Research is the process of solving problems and finding facts in an organised way. Research is done by using what is known (if anything), and building on it. Cancer research aims to find new ways to ensure that we have least risk of getting cancer, the best treatment if we do, and the most hope of thriving afterwards. There are many different types of research such as projects that look at cancer prevention to laboratory research that examines new  or improved ways to detect cancer or developing new drugs to fight cancer , from clinical trials to quality-of-life research for survivors.

What Types of Questions are relevant to the Survey?

This survey is about your experience of oesophageal cancer. It is about finding out what future research should be done to focus it on what matters to you.

It is your opportunity to tell us about what questions about oesophageal cancer you would like answered by research.

 

Your questions can relate to anything that you choose. Some areas you might want to consider are questions related to :

  • Causes of oesophageal cancer

  • Identifying or diagnosing oesophageal cancer

  • Preventing oesophageal cancer

  • The effects of oesophageal cancer on everyday life (work, relationships,health and wellbeing)

  • What helps treat oesophageal cancer (interventions, therapies, treatment, care, supports)

Or anything you would like to know the answer to.

 

You will be asked to provide us with a maximum of 5 questions. They do not have to be in order of importance.

I can't think of any Questions (but I have some Comments I would like to make)

It can be difficult to make up a question. You might like to write down an experience that you have had where there was some aspect of the experience where the best way forward was not clear. We will be happy to read your comments and see if research might help decide the best treatment or test.

Are there any Questions which are not suitable?

We are trying to focus this project on questions which affect patients with oesophageal cancer all over the world. Therefore, we would request that you do not list questions that focus on the delivery of healthcare in your country (such as waiting times, facilities or resources). Although these are important issues, they must be studied in each individual country.

I have more than 5 Questions, should I include more? 

In this project we are trying to identify what is most important for researchers to identify about oesophageal cancer. We would therefore like if you could think about which of your questions would be the most important to answer first - that is the ones that are more of a priority. If you need more space to write a comment on the same theme, please feel free to add additional paper.

I have fewer than 5 Questions, what should I do? 

We have suggested that people completing the survey only write down the five most important questions to them. However, if you have fewer questions (even just one!) then we would still love to hear from you.

Will my taking part in the Survey be kept Confidential? 

By participating in this survey you are agreeing to allow us to publish your question(s) and any comments you make, Your name will not be published. We will not publish any information that could be used to identify you. Your contact details will not be passed on to other people.

Do I have to take part?

It is up to you to decide whether you would like to take part. You can withdraw at any time without giving a reason why. By completing the survey you agree for us to publish any of your questions or comments.

What happens to the results of the Survey?

When we receive the survey response, we will sort through them and produce a list of the most common questions. We will check to make sure that these questions have not already been answered by research. After this, we will ask people to take part in a second survey to tell us which of the unanswered questions are a priority. You can tell us on the first survey if you are happy to be contacted again.


After we have found out what are the top priority questions we will hold a workshop involving people with oesophageal cancer, their families and healthcare professionals to a workshop to prioritise the top ten questions.

Where can I get further information? 

If you have any questions please contact:
Dr Claire Donohoe
Department Of Surgery
Tel: +353 1 896 3268 
Email: oesophagealcancerpsp@gmail.com
Write: Trinity Centre for Health Sciences, Trinity College Dublin, the University of Dublin, St James's Hospital, Dublin 8, Dublin, Ireland
Twitter: www.twitter.com/TheOesophageal

 

KEY PEOPLE

Pure Professionalism

DR CLAIRE DONOHOE

Lead Researcher

MR LEE AO LIK

Research Co-ordinator

PROF JOHN REYNOLDS

Steering Group Committee

MS NOELLE RYAN

Steering Group Committee

MS MICHELLE FANNING

Steering Group Committee

DR EMER GUINAN

Steering group Committee

CHARLIE MCMANN

Patient Representative

 

CONTACT US

Get in touch with Oesophageal Cancer Priority Setting Partnership(PSP) to learn more about our work and how you can get involved.

You can contact us to get a paper copy of the survey. 

Trinity Centre for Health Sciences, Trinity College Dublin, the University of Dublin, St. James’s Hospital, Dublin 8, Dublin, Ireland

+353 1 896 3268

 

KEY PEOPLE

Steering group committee

MS NOELLE RYAN

 CEO

Oesophageal Cancer Fund (OCF) 

MS MICHELLE FANNING

Senior Specialist Dietitian

MS BRONA WRIGHT

Survivor

MR TONY GALVIN

Clinical Nurse Manager

MR SEAN DORGAN

Survivor

DR EMER GUINAN

Physiotherapist and Researcher

MS ALISON LAMBOURN

Carer

DR AOIFE CANNON

Cancer researcher

MR PETER COSGROVE

Survivor

MS JOAN COSGROVE

Carer

MS BRIDGET BROWN

Survivor

DR CLAIRE DONOHOE

Lead Researcher

Consultant surgeon

MR LEE AO LIK

Research Co-ordinator

Medical Student

MS FIONA CROTTY

Investigator

Surgical trainee

PROF JOHN REYNOLDS

Consultant surgeon and cancer researcher

+353 1 896 3268

Trinity Centre for Health Sciences, Trinity College Dublin, the University of Dublin, St. James’s Hospital, Dublin 8, Dublin, Ireland

©2020 by Oesophageal Cancer Priority Setting Partnership(PSP). 
Funded by Healthcare Resaerch Board (HRB)

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