NICE CG53 Stakeholder engagement meeting

This week NICE held an introductory stakeholder meeting in London. There were limited places at the meeting and WAMES’ request to join the meeting by video conference was not successful. Future meetings will require a trip to London.

NICE stakeholder meeting for CG53 16th January 2018: Impressions from the meeting by Sally Burch

The meeting started with some explanations of the process of review. It was explained that, in a break from the traditional process, this engagement meeting was being held before any scoping document was produced. There were 60 or so people in attendance and overall the meeting had a positive feel to it.

We were welcomed to the meeting by Philip Alderson, the Clinical Advisor for NICE. Then Mark Baker, the Centre for Guidelines Director at NICE, explained about the guideline update. One thing he said struck me as very important. He said, “We are going to tear it up and start again. We won’t allow it to look the same.” I found this reassuring. Indeed, he reiterated several times that the guideline was to be replaced in full. He also said that a re-naming of the guideline would be possible…

Victoria Thomas, the Head of the Public Involvement Programme for NICE, told us that in this update they would be “starting with the perspective of the patient”. She explained that there would be four patient members on the guideline development committee, and that individual patients (or carers) could apply as themselves, ie they do not need to be attached to a stakeholder group to be on the committee. Read more

MEA blog post: Reviewing the NICE guideline for ME/CFS: The Stakeholders Engagement Workshop – A Report by Dr Charles Shepherd, 17 January 2018

… Among the doctor’s present were Dr Abhijit Chaudhuri, Professor Jonathan Edwards, Dr Luis Nacul (from the ME Biobank); Dr Paul Worthley (ME Trust), Professor Michael Sharpe and Dr William Weir.

The Countess of Mar was also present to represent the Forward ME group of charities.

NICE presentations:

Stakeholders were placed into small groups on a table and the meeting was split into two sections. The first section involved a series of short presentations from senior people at NICE who are going to be playing a key role in the development of this guideline.

Dr Philip Alderson, Clinical Adviser at NICE, welcomed everyone.

Professor Mark Baker, Centre for Guidelines Director, spoke about how NICE had now accepted that the current guideline was no longer meeting the needs of people with ME/CFS and that they needed to prepare a completely new guideline.

Dr Nora O’Flynn, Chief Operating Officer at the National Guideline Centre, explained how the work on this guideline would be based at the Royal College of Physicians and the way in which it would be prepared. This presentation contained some important practical information on the timeline:

• Scope Stakeholder Workshop on May 25th
• Scope consultation from 21st June to 19th July
• Advertising for guideline committee members from 21st June to 19th July
• First guideline committee meetings will start at the end of November 2018
• Guideline development process will take about 70 weeks [c. April 2020]

The development process will involve:

• Discussion and preparation of the Scope of the guideline – i.e. what it is going to cover and not cover
• Dealing with important clinical questions
• Reviewing of the protocols
• Obtaining evidence reports covering clinical and economic evidence. The systematic review of published evidence will be carried out internally at NICE this time

And on the membership of the guideline committee:

• This will be multidisciplinary as far as health professionals are concerned with 10 to 12 members
• Up to 4 lay members – patients and carers who will be expected to make a significant input
• The position of Chair of the Guideline Committee is currently being advertised and interviews will take place in February. Read more

ME Research UK blog post: NICE Guideline Review – Stakeholder Workshop Jan 2018

… “This meeting was extremely encouraging. Professor Mark Baker (Director of the Centre for Guideline at NICE) is determined to ‘do the right thing’ – and he does listen. So, I am hopeful that the outcome will be more favourable in the upcoming guideline than the present version. I also think that I have got through to him over the last year on the principle of “First, do no harm” in regard to Graded Exercise Therapy [GET] and that they may take the unusual step of issuing an Interim Advisory Note before the next version of the guideline is published.

The Core Principles for developing all NICE Guidance cover:

• the establishment of Independent Advisory Committees;
• the establishment of a Comprehensive Evidence Base;

and all:

• receive Expert Input;
• have Public Involvement;
• include Genuine Consultation;
• are subject to Regular Review;
• operate under an open and transparent process; and,
• consider Social Values and Equity.   Read more