NOW LIVE: Smell & Taste Disorders Priority Setting Partnership Survey
The Smell & Taste Disorders Priority Setting Partnership Survey is now live.
The purpose of the survey is to help researchers and research funders understand what are the most important questions that people with smell and taste disorders, their family, friends, carers and the clinicians who work with them, want to be answered by research.
The results of this survey will help influence funding for research and categorise these questions in order of importance.
We would like to hear your thoughts so we can produce an accurate representation of the needs of people affected by a smell and/or taste disorder.
The James Lind Alliance has been involved in many Priority Setting Partnerships and we are proud to be working with them to bring this methodology to the world of smell and taste.
The Flyer is available to download here:
PSP-Flyer.jpg (39 downloads)
PSP Privacy Statement: If you take part in the PSP survey, you don’t need to provide contact details and if you do, we will keep them separate from your survey answers. You won’t be personally identifiable in any analysis of the results. We will keep the information you provide secure. We are only collecting contact details to be able to contact you if you tell us you want to take part in the next phase of the survey and/or if you would like to hear about the survey results. We will not use your details for any other purpose. If you have any questions please email us at email@example.com
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James Lind Alliance Smell & Taste Disorders Priority Setting Partnership
The James Lind Alliance (JLA) is a non-profit making initiative established in 2004. It brings patients, carers and clinicians together in Priority Setting Partnerships (PSPs) to identify and prioritise the Top 10 unanswered questions or evidence uncertainties that they agree are the most important.
The aim of this is to make sure that health research funders are aware of the issues that matter most to the people in their everyday lives. Click here to read more.
Fifth Sense have been working on developing a PSP for smell and taste disorders for the last 8 years. Duncan Boak- Founder and Chair explains “Fifth Sense has pioneered collaboration between patients, their families and clinicians to transform the way smell and taste disorders are understood, treated and managed. The PSP builds on the work we’ve done over a number of years and gives us a fantastic opportunity to open up new avenues of patient-focused research, the need for which is even greater following the recognition of smell loss as a symptom of Covid-19.“
The Steering Group is comprised of medics and clinicians across Rhinology, Neurology, Psychology and General Practice. They are joined by patient and carer representatives to cover the causations and conditions and also includes a subgroup representing the needs of young people. The Steering Group will also collaborate with other health/social care professionals and representatives of relevant organisations.
The survey will amongst other issues, cover symptoms such as a reduction or complete lack of smell or taste, smell and taste distortions and smell hallucinations. The survey will produce a vital list of informed priorities which will be a catalyst for future research into conditions that have a serious quality of life impact on so many.
Led by Professor Carl Philpott (Director of the UK’s first NHS clinic focusing on smell and taste disorders) and supported by funding from the National Lottery Community Fund, the partnership will build on the increased awareness of smell and taste disorders that has resulted from the Covid-19 pandemic and provide a unique opportunity to engage patients and their families and friends, as well as the clinicians who support them.
He said: “This partnership will work hard to reach people with a smell or taste disorder– people whose voices are frequently not heard in research.”
The PSP Beginnings:
Collaboration and communication between patients, carers, clinicians and partners will enable a greater understanding of what is important for people affected by smell and taste disorders and drive and improve the treatment options.
To read more about the James Lind Alliance, you can visit their website at https://www.jla.nihr.ac.uk/