Head and Neck Cancer Priority Setting Partnership
(ENTUK and Head and Neck 5000 in association with the James Lind Alliance)
To Laryngectomee Clubs:
Head and Neck Cancer Research Priority Setting Partnership - Introduction
I am contacting you to ask for the help of your club and its members in a project that has just been launched. The aim of the project is to produce a list of uncertainties or unanswered questions about the treatment of head and neck cancer that can be resolved by research. The aim is then to produce a priority list and the results will be passed to research commissioning bodies to be considered for funding.
What is unique about the project is that it is a collaboration between clinicians and patients on equal terms and the views of both groups will have equal weight in arriving at decisions about the priority list. . People may suffer unnecessarily because uncertainties about the effects of treatments have not been addressed in research. Patients and doctors may have very different ideas about what important questions need to be addressed compared to those raised by the drug manufacturers or medical technology companies. The aim is to bring our ideas to the fore.
How you can help
Your club or individual members of the club can contribute to the project by completing the attached form and submitting one or more examples of a treatment uncertainty or unanswered question. Could you please arrange a discussion of the project at one of your meetings or pass the information to individual members who you think may be interested. The address to which forms can be returned is included on the form and the deadline for completion has been extended to November 30 2011.
The form is available for download, so that it can be completed and sent in by email rather than by post. The Chesterfield club website ( www.hnchelp.org.uk ) has a link which can be found by clicking on the Priority Setting Partnership item on the home page menu.
It does not matter if the ideas that patients and carers submit are real uncertainties or not, once they are collected they will be checked to find out if they have been thoroughly researched or not. Please consider “treatment” in its widest sense to include anything that contributes to a successful outcome in treating head and neck cancer and improves the quality of life of patients.
Please use the Contacts page in "About Us" on this website if you need further information or help.
Thank you for your time and any assistance you can give to this project.