FAQ

The main way you can help is by completing our survey with any questions you have about living with and beyond cancer. We are looking for questions that research hasn’t found the answer to yet, but you don’t have to worry about that. We’ll check to see if your question has already been answered or not. The survey will open later in 2017.
Anyone with an interest in living with and beyond cancer can complete the survey, even if they have no personal experience. But we would really like to hear from people who are living with cancer of any type or who has had a cancer diagnosis (in the past) or those who are close to them. And from people who have suffered the loss of someone they love due to caner. We also really want to hear from health professionals whose day-to-day work involves treating or supporting those with cancer.

In accordance with the JLA’s fundamental aims, only those representing patients and heath care professions (who would not normally be involved in setting the clinical research agenda) are able to prioritise in this project. Non-clinician researchers or organizations which represent them will be excluded from prioritisation. Representatives of organizations deemed by JLA or the Steering Group to have conflicts of interest will also be excluded.

The demographic information we ask for is to help us ensure that different interest groups are represented in the findings. If you would prefer not to share this information, that is fine. Any personal information you do supply will be used only in conjunction with the Living With and Beyond Cancer PSP, which will complete in 2018.
It doesn’t matter if your unanswered question has previously been researched, as we will check that for you. It’s most important that you ask any question that is unanswered for you. If your question has been answered, and others are also asking a similar question, this highlights a gap in communication. This will help us to identify answers that need to be made more readily accessible.
We may limit the number of questions you can ask, please see detail of the survey when it opens.
That’s absolutely fine. Please let us know your address by filling your detail here and specify you would like a paper survey or call 0203 469 6767.
The survey will be available to complete later in 2017.
Guidelines provided by the James Lind Alliance detail the process all Priority Setting Partnerships must carry out when creating a list of the most important unanswered questions. Find out more about this process here.
All questions are reviewed by the Steering Group. If your question is unanswered by research then it will form a list of questions to be prioritised to a ‘Top Ten’. Any questions that are not prioritised will still be published as an unanswered question that can form the basis for future research.
Please ask a question here. We will get back to you as soon as possible.
The top ten unanswered questions will be promoted through research networks such as the NCRI and governmental agencies such as the National Institute of Health Research to encourage research, as a priority, in these areas. All unanswered treatment questions will appear on the DUETs database.
Recalling personal experiences associated with cancer may potentially lead to upsetting thoughts or emotions. Further support can be found through:

Macmillan Cancer Support
https://www.macmillan.org.uk/
0808 808 00 00 Monday – Friday 9am – 8pm

Marie Curie
https://www.mariecurie.org.uk/
0800 090 2309 Monday – Friday 8am – 6pm; Saturday 11am to 5pm

Shine Cancer Support
http://www.shinecancersupport.org/

Any questions about living with and beyond cancer are welcome.

Here are some examples of questions that were submitted for other health conditions:

Are breathing exercises helpful in controlling asthma?
How effective is gargling aspirin to relieve a sore throat?
Which is safer and more effective for treating eczema: steroids or calcineurin inhibitors?
Does early diagnosis and aggressive treatment influence the course of disease?
What is the best surgical procedure to perform in treating HS e.g. incision & drainage, local excision, wide excision?

The ‘Top 10’ uncertainties will be publicised widely to ensure that researchers and those who fund research really understand what matters. This project is being facilitated by the James Lind Alliance, which is part of the National Institute of Health Research. The top ten uncertainties will be directly reported to the NIHR Evaluation, Trials and Studies Coordinating Centre, which provides evaluation and funding of research for the NIHR. They will be promoted to many other research organizations and funders in the UK and abroad.

The questions that do not make the top ten are not forgotten. They will be available on the Living With and Beyond Cancer PSP website and are all entered into a large open access database run by the NHS. You can find it at http://www.library.nhs.uk/duets/