Sunday, 13 August 2017

NICE Guideline Review: We hear back from NICE about the identity of ‘topic experts’ | 13 August 2017

The ME Association learns that NICE consulted with a patient representative, two neurology experts, three psychiatry experts, and one paediatric expert over the recommendation to take ‘no action’ in the surveillance report.

As part of the current NICE guideline review consultation, stakeholders were sent copies of a surveillance report that had been compiled in association with certain ‘topic experts’.

The ME Association, and others, felt it might be important to try and learn more about the review process as well as the names of those who were consulted and what contribution they had made to the report and its recommendations.

Dr Shepherd, Hon. Medical Adviser to the ME Association, had been in correspondence with NICE in pursuit of the information, and we received the following reply late last week. What remains unclear is whether the experts and patient representative are among those listed in the 2007 guideline, or were contacted specifically for this 2017 review:

Friday, 11th August 2017

Dear Dr Shepherd

Thank you for your follow up email about the topic experts in respect of the surveillance review for the CFS/ME guideline.

In your email you refer to a request for details of membership of the expert group that reviewed the evidence for NICE. There was not a topic expert group or panel as such, but we did ask topic experts and members of the original guideline development group for their opinion.

To be clear, it is the NICE surveillance team that conducts the literature searches and reviews the evidence. They summarise the relevant evidence and highlight any studies that may have an impact on our recommendations. Information identified by the surveillance team forms the basis of the review proposal which is considered by NICE’s Guidance Executive. I can see that my colleague XXXX provided details of the roles within the surveillance team in his previous response.

The final decision about whether an update is needed is based on a balanced assessment of new relevant evidence published since the guideline was developed, the view of topic experts, feedback during consultation and other sources of information on the continued relevance of the of the guideline. The findings of the check on the need for an update are discussed with topic experts. All proposals go through an internal validation process before submission to Guidance Executive. It is Guidance Executive that takes the decision to update the guidance or not.

You commented on our previous email where we say that ‘we do not routinely publish the identities of topic experts’. The use of the word ‘routinely’ was meant to indicate that this is not part of our process, rather than they are available on request. As you may be aware we have been asked for the names of the topic experts in a freedom of information request. I can confirm that we hold the names of the topic experts who were asked for their opinion on the relevance of the published guideline. However we consider that the names are exempt from disclosure under 2 sections of the Freedom of Information Act.

For your information the topic experts are from the following fields: neurology (2), psychiatry (3), paediatrics (1), patient representative (1)

Kind regards
Communications Executive
Corporate Communications
National Institute for Health and Care Excellence
Level 1A | City Tower | Piccadilly Plaza | Manchester M1 4BT | United Kingdom
Tel: 0300 323 0141 | Fax: 0300 323 0149

from ME Association



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