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Head and Neck Cancer
A JLA Priority Setting Partnership

A priority setting partnership between patients and clinicians with an interest in Head and Neck Cancer to prioritise treatment uncertainties.

Background
The JLA is a project which is funded jointly by the National Institute of Health Research and the Medical Research Council. Its aim is to provide an infrastructure and process to help patients and clinicians work together to agree which are the most important treatment uncertainties affecting their particular interest, in order to influence the prioritisation of future research in that area. The JLA defines an uncertainty as a “known unknown” – in this case relating to the effects of medical treatment.

• In Sept 2010, The British Society for Academic Otolaryngology (part of ENT-UK) supported by the British association of Head and Neck Oncologists and the National Cancer Research Institute Head and Neck Clinical Studies Group, asked the JLA to work though this process with all interested organisations in Head and Neck Cancer.

Aims and objectives of the Head and Neck Cancer PSP
The aim of the Head and Neck Cancer PSP is to identify the unanswered questions about Head and Neck Cancer treatment from patient and clinical perspectives and then prioritise those, which both patients and clinicians agree are the most important.

• The objectives of the Head and Neck Cancer PSP are to:
• work with patients and clinicians to identify uncertainties about the effects of Head and Neck Cancer treatments
• to agree by consensus a prioritised list of those uncertainties, for research
• to publicise the results of the PSP and process
• to take the results to research commissioning bodies to be considered for funding

Partners
Organisations and individuals will be invited to take part in the PSP, which represent the following groups:

• people who have or have had Head and Neck Cancer
• partners and carers of people who have or have had Head and Neck cancer
• medical doctors, nurses and professionals allied to medicine with clinical experience of Head and Neck cancer

It is important that all organisations which can reach and advocate for these groups should be invited to become involved in the PSP. The JLA will take responsibility for ensuring the various stakeholder groups are able to participate equally to the process.

Organisations wishing to participate in the PSP will be required to affiliate to the JLA. Details on the affiliation procedure can be found at: http://www.lindalliance.org/Affiliate_application_online.asp.

Individual patients can also participate in the PSP, and can submit their priorities directly to the head and Neck Cancer PSP or through an affiliated organisation.

For full details of the Protocol click here

The JLA Head and Neck Cancer Research Priority Setting Partnership Initial Stakeholder Meeting
This meeting took place on 3rd March 2011 in Bristol and was attended by patients, carers and clinicians. To see a copy of the invitation, click here. Videos of the main presentations can be viewed by clicking here.

Identifying and Harvesting Treatment Uncertainties
You are invited to take part in this process and to contribute to identifying, and deciding the most important, research questions for the treatment of head and neck cancer. We think that it is vital that more research is done in this area, and that this research focuses on the questions that are most important to people who suffer from head and neck cancer, their carers and relatives and the health professionals who treat them. For futher details please and to see invitation letter - click here (PDF)

If you would like to participate in this study, please complete the attached survey which is designed to collect “treatment uncertainties” from a wide range of individuals and organisations. If you wish to complete the form by hand, please print, complete and post this document to Jo White, ENT UK, The Royal College of Surgeons of England, London WC2A 3PE. You may complete the form electronically, in which case please use this Word document provided. For copy of survey click here

When completed, please email the form to Jo White at ENT UK, Jo@entuk.org