We have written a briefing entitled NICE and Patient Involvement...What's the point? because the NICE Consultation on improving how patients and the public can help develop NICE guidance and standards is currently open.
The topic was discussed at the Cancer52 All Member Meeting on 24th January 2017. As a result of that presentation and follow up Q&As a small working group of Cancer52 members was formed to answer the broad question - 'What's the point?', with the aim of identifying where patient involvement makes a difference to NICE process or results and how we could better manage the time and energy involved from patient groups and patients against what the likely impact of patient group involvement is likely to be.
We're sharing this now as this work will form the foundation of Cancer52's response to the NICE consultation, which shuts on 28th February, and we hope that it will prove helpful to any members responding separately too.
My particular thanks to the working group who contributed so much to this work and to Cancer52 policy lead Sasha Daly of Teenage Cancer Trust
Chris West, Bloodwise
David Innes, CLL Support Association
Nic Puntis, GIST Support UK
Zack Pemberton-Whiteley, Leukaemia Care
Karen Friett, The Lymphoedema Support Network
Roger Brown, WMUK