There are three patient/lay representatives on the methods working group with a wide range of experience, covering a range of topic areas, reflecting the programmes under review. Two of the patient/lay representatives also belong to the Patients Involved in NICE coalition.
Patient groups will be involved in the review of each of the specific methodological areas as detailed in the paper presented to the NICE board on 17 July 2019. Experts in the area will be invited to participate in topic specific methods task and finish groups.
NICE has established a dedicated patient working group. There are six patient organisation representatives on the group, including those who belong to the Patients Involved in NICE coalition. The group will work directly with patient/carer groups to coordinate the patient perspective on both methods and process. A stakeholder workshop with patient groups was held in January 2019 that included representatives from 22 patient organisations.
The patient working group has recently disseminated a survey to patient umbrella groups to develop a clear understanding of the patient perspective on both methods and processes. The survey runs until 5pm on Monday 12 August 2019. It will be promoted via social media and sent directly to groups working with NICE. Patient organisations can communicate with representatives on the methods working group and patient working group outside of this survey.
Patient organisations will have the opportunity to comment directly on proposals during the public consultation in summer 2020.
NICE is implementing other opportunities to encourage more patient group involvement throughout the review via provision of a subscription based bulletin for updates and information (which people can subscribe to via their website) and exploring arrangements of additional engagement sessions (i.e. webinars), as and when appropriate.