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Fifth Sense working together with NIHR to promote patient-led research

Helen Hall, Research Grants Adviser at James Paget Hospital, and Sue Clarke, Fifth Sense volunteer member

On February 28thFifth Sense partnered with the National Institute for Health Research (NIHR) at an event hosted by the research team at James Paget Hospital in Great Yarmouth. The event, called On the Nose and You, was linked to Anosmia Awareness Day (Feb 27th) and confirmed the commitment of all parties to patient involvement in clinical research generally and anosmia in particular. In this regard, visitors heard about a live project named MACRO, which is focusing on the treatment of chronic rhinosinusitis.

Those arriving at the event were greeted by Fifth Sense volunteer Sue Clarke and the teams from the NIHR and the James Paget Hospital. Among the stalls offering information, support and advice, people were also given the opportunity to take a smell test. A big thank you to Sue, who travelled all the way from Hertfordshire to man our stand. “A steady stream of people showed an interest in what we were doing,” she said, reporting that visitors came from as far afield as Bristol and Watford. She added, “one man told me that I was the first anosmic he had ever met – yet he had been unable to smell properly for thirty years!”

Under the auspices of the Department of Health and Social Care, the NIHR is the nation’s largest funder of health and care research. Its mission is to help the NHS support leading-edge, patient-led research undertaken by ‘outstanding individuals in world-class facilities’. The MACRO project is an example of just such an initiative. Fifth Sense is proud that Professor Carl Philpott, a Fifth Sense trustee based at James Paget Hospital, and Professor Claire Hopkins from Guys Hospital, are project leaders on MACRO. Funded with a £3.5m grant from the NIHR, MACRO will shed much-needed light on the treatment of chronic rhinosinusitis – one of the main causes of smell loss. Fifth Sense Public and Patient volunteers have helped inform the design, development and testing of a programme that will ultimately be rolled out across six hundred patients and be linked to sixteen hospitals nationwide. A major clinical trial will test the efficacy and costs of three different treatment regimens in order to determine a best practice approach for patients, GP’s and clinicians across the NHS. You can read more on the MACRO website.

Prof Carl Philpott

Following lunch, Professor Philpott gave a talk on MACRO, the importance of patient involvement in such work and the challenges posed when obtaining patient participation in clinical trials. A patient’s perspective was provided by a lady participating in the MACRO programme. She was interviewed by a member of the NIHR’s local team.

The event prompted tweets and photographs and was picked up by BBC Radio Norfolk. The station subsequently broadcast a session with Professor Philpott featuring an on-air smell test with presenter Nick Conrad.

Duncan Boak, Founder and Chair of Fifth Sense commented; “Our hope is that MACRO sets the standard for future patient-led clinical research into smell and taste disorders. We thank the research team at James Paget and the local staff at the NIHR who co-ordinated this event. It was a fantastic demonstration of how the UK’s largest clinical research funding body are working together with patients and clinicians to effect positive change for those suffering from anosmia and related issues.”

For more information on the MACRO project visit www.themacroprogramme.org.uk

 

 

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