The Smell & Taste Disorders Priority Setting Partnership Survey is now closed.
Research
The Smell & Taste Disorders Priority Setting Partnership Survey Has Now Ended
The first phase of the Smell & Taste Disorders Priority Setting Partnership Survey closed earlier in the year. And the second phase ended in November 2021.
Our fabulous team of analysts and steering group committee worked really hard to summarise the hundreds and hundreds of question you put forward.
Thank you to everyone who shared their views that will be used to help researchers and research funders understand what 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 are.
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 PSP concluded in November 2021 and in the new year we update you all as progress continues…..
James Lind Alliance Smell & Taste Disorders Priority Setting Partnership
Introduction
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.
Background:
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:
On the 25th of September 2020, the Steering Group came together to participate in the first meeting facilitated by the JLA Adviser Toto Gronlund.
In line with current Covid-19 guidelines, the meeting took place at Conference Aston in Birmingham for those able to attend in person and used video conferencing to include those who could not. The agenda included reviewing the process, considering the survey strategy, design and composition and setting action plans.
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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/