Patient and Public Involvement
Fifth Sense has pioneered collaboration between people affected by smell and taste disorders, their carers, clinicians and researchers.
We also deliver activities to help public and professionals understand the impact of smell and taste disorders and the need for improved healthcare services, support and increased research. We place the people we represent at the heart of our work and engage and involve them in our education, research and engagement activity.
Public and Patient Involvement Panel
Fifth Sense operates a Public and Patient Involvement (PPI) Panel, led by the charity’s PPI and Research Coordinator. This has provided PPI input to a number of research trials, including the MACRO programme, a £3.2m NIHR-funded grant to establish best treatment and management of patients with Chronic Rhinosinusitis where our PPI lead is the patient representative on the research team.
Smell and Taste Disorders Priority Setting Partnership
In September 2020, Fifth Sense started working with the James Lind Alliance and the University of East Anglia to identify research priorities in the field of smell and taste disorders.
Our Smell and Taste Disorders Priority Setting Partnership (PSP) gave patients, carers and clinicians the opportunity to put forward their priorities for future research. The PSP steering group consisted of six patient representatives covering the main causation groups for smell and taste disorders, ENT specialists, a neurologist, a general practitioner and a psychologist.
The PSP resulted in a set of research priorities which Fifth Sense is taking forwards via our Research Hub
Fifth Sense National Conference
Fifth Sense has run regular National Conferences since 2013 which are attended by patients, carers, clinicians and researchers. These provide an opportunity for people affected by smell and taste disorders to share the challenges they face in obtaining medical advice and treatment, gain mutual support, and learn more about smell and taste impairment from experts in the field.
In 2017 and 2021 we worked with the Royal Society of Medicine, who hosted “Medicine and Me” events where patients with various causes of smell disorders presented their story and then a clinician responded.
Public and Professional Engagement
Fifth Sense also has an established track record in engaging the public in our work, helping them to understand the challenges faced by people with smell and taste disorders and the vital role that the senses of smell and taste play in our lives. Examples of the events we have organised or participated in are below:
- 2014: Farsley Festival, Leeds (general public)
- 2016: Festival of the Senses, Anglia Ruskin University, Chelmsford (general public)
- 2017: European Chemosensory Research Organisation meeting, Cambridge (smell and taste scientists)
- 2019: On the Nose and You NIHR Patient Engagement event, Great Yarmouth (general public)
- 2019: Public Engagement in Research NIHR ENT Speciality Group meeting, Chester (healthcare professionals and patient representatives)
- During the Covid-19 pandemic we have delivered a range of virtual events for different audiences, including our patient and public-facing #LetsTalkSmellAndTaste events and a range of webinars about smell and taste disorders for healthcare professionals