OESOPHAGEAL CANCER PRIORITY SETTING PARTNERSHIP(PSP)

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in this survey you are agreeing to allow us to publish your question(s) and any comments you make, Your name will not be published.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?