NICE's decision to pause publication of the updated guideline on diagnosis and management of ME/CFS

Dr Salisbury made this Rhyddid Gwybodaeth request to National Institute for Health and Care Excellence

Automatic anti-spam measures are in place for this older request. Please let us know if a further response is expected or if you are having trouble responding.

Roedd y cais yn rhannol lwyddiannus.

Dear National Institute for Health and Care Excellence,

On 17 August 2021, NICE reported via its website, and in an email to stakeholders, that the updated guideline release had been 'paused'.

This decision is beyond unprecedented, particularly as it came the day before the expected publication date which had already been pushed back.

I am therefore writing to request that NICE publishes any and all internal correspondence between NICE officials/coordinators and the guideline committee, as well as external correspondence with professional bodies (guideline stakeholders or otherwise) that led to and justifies this decision. The material should include all correspondence detailing "issues [and concerns] raised during the pre-publication period with the final guideline", and the responses from NICE.

Please include all correspondence between 29 March 2021—the date on which the publication date of final guideline was first delayed—and today (17 August, 2021).

Yours faithfully,

Dr Dom Salisbury

National Institute for Health and Care Excellence (NICE), National Institute for Health and Care Excellence

Dear Dr Salisbury

 

Reference number: EH-317153

 

FREEDOM OF INFORMATION ACT 2000

 

Thank you for your request for information under the Freedom of
Information Act sent to our office on 17 August 2021 , in which you asked
for the following information:

 

‘any and all internal correspondence between NICE officials/coordinators
and the guideline committee, as well as external correspondence with
professional bodies (guideline stakeholders or otherwise) that led to and
justifies this decision. The material should include all correspondence
detailing "issues [and concerns] raised during the pre-publication period
with the final guideline", and the responses from NICE.

 

Please include all correspondence between 29 March 2021—the date on which
the publication date of final guideline was first delayed—and today (17
August, 2021).’

 

NICE considers the pre-publication period to be between the embargoed
release to stakeholders and the publication date. In the case of the
ME/CFS guideline this would be from 4 to 18 August 2021. Therefore, please
could you clarify the time period of your request and that the following
interpretation of the information requested is correct:

                                                                                                                         

 1. internal correspondence between NICE officials/coordinators and
members of the guideline committee during the time period to be
confirmed.
 2. external correspondence with professional bodies (guideline
stakeholders or otherwise) detailing issues and concerns raised that
led to the decision to pause publication during the time period to be
confirmed.

 

We will not consider your request any further until we have received the
clarification requested.

 

If you have any queries you are welcome to email [1][NICE request email] or
call 0300 323 0141 and a member of the team will be able to assist.

 

Kind regards

 

Helen

 

 

Helen Finn (she/her)

Senior communications manager (enquiries)

National Institute for Health and Care Excellence

Level 1A, City Tower | Piccadilly Plaza | Manchester | M1 4BT | United
Kingdom

Tel: 44 (0)300 323 0141

Web: http://nice.org.uk

 

 

 

dangos adrannau a ddyfynnir

Dear National Institute for Health and Care Excellence (NICE),

In response to your requested clarification, I will attempt to rewrite my request to avoid any ambiguity.

I am asking that NICE provides any and all
(i) internal correspondence/communication between NICE staff (including that involving the guideline committee or any individual member(s) of the committee); and
(ii) external correspondence/communication with professional bodies or individuals (guideline stakeholders or otherwise);

that details or relates to the the decision to pause publication of the final guideline and any justification given for the pause. This should include - but is not limited to - evidence of the issues and concerns raised during the pre-publication period with the final guideline, and NICE's responses to these issues/concerns.

Please include all correspondence pertaining to the above stated matters between 29 March 2021 and 17 August, 2021. My request is not limited to only the pre-publication period (4–18 August 2021) as the decision to pause may have been influenced by opposition to the guideline or other issues/conerns registered before the pre-publication period.

Yours sincerely,

Dr Salisbury

National Institute for Health and Care Excellence (NICE), National Institute for Health and Care Excellence

Dear Dr Salisbury

Reference No: EH-317153

FREEDOM OF INFORMATION ACT 2000

I am writing in relation to your request for information relating to the decision to pause publication of the ME/CFS guideline.

I’m sorry that we are not able to meet the 20 working day timescale in this case. This is due to an unexpectedly high level of requests and lower than usual staff availability at this time.

We are working on your request and I expect to be able to provide you with a full response by 01 October 2021.

Kind regards

Helen

Helen Finn (she/her)
Senior communications manager (enquiries)
National Institute for Health and Care Excellence
Level 1A, City Tower | Piccadilly Plaza | Manchester | M1 4BT | United Kingdom
Tel: 44 (0)300 323 0141
Web: http://nice.org.uk

dangos adrannau a ddyfynnir

Dear National Institute for Health and Care Excellence (NICE),

This request is now delayed, even against the revised timetable. While I understand that NICE is currently dealing with a higher number of requests than usual, many of the requests are essentially asking for the same information.

I look forward to receiving a response in the coming days.

Yours sincerely,
Dr Dom Salisbury

National Institute for Health and Care Excellence (NICE), National Institute for Health and Care Excellence

Dear Dr Salisbury

In my email of 20 September, I indicated that we expected to provide the response to your request under the Freedom of Information Act by 01 October 2021.

I am sorry that our response has been further delayed.

Due to the number of similar overlapping requests, the complexity of processing them and reduced capacity within the small team that handles Freedom of Information requests at NICE, it has been necessary to request advice from our external legal advisers. This has caused additional delay.

We will provide you with a response as soon as we can.

Kind regards

Helen

Helen Finn (she/her)
Senior communications manager (enquiries)
National Institute for Health and Care Excellence
Level 1A, City Tower | Piccadilly Plaza | Manchester | M1 4BT | United Kingdom
Tel: 44 (0)300 323 0141
Web: http://nice.org.uk

dangos adrannau a ddyfynnir

National Institute for Health and Care Excellence (NICE), National Institute for Health and Care Excellence

1 Atodiad

Dear Dr Salisbury

Reference No: EH-317153

FREEDOM OF INFORMATION ACT 2000

Thank you for your request for information dated 17 August 2021 and clarified on 20 August 2021, made under the Freedom of Information Act 2000 Act (FOIA). I am sorry for the delay in replying. You asked NICE for the following information in relation to the decision to pause the release of guidelines for ME/CFS:

(i) internal correspondence/communication between NICE staff (including that involving the guideline committee or any individual member(s) of the committee); and

(ii) external correspondence/communication with professional bodies or individuals (guideline stakeholders or otherwise);

that details or relates to the decision to pause publication of the final guideline and any justification given for the pause.

The FOIA relates to recorded information held by a public authority at the time of the request and following a search of our records I can confirm that we hold information that falls within the scope of your request.

Copies of the requested documents are attached but personal data relating to third parties (such as names and contact details) has been withheld as we consider it to be exempt from disclosure under section 40 of the FOIA. A full explanation is given below. Additionally, information that is contained within the documents but that is not within the scope of your request has been removed.

For clarity and context:
• Document 1 is an internal email exchange between members of NCIE’s guidance executive
• Document 3 is an internal email exchange between 3 members of NICE’s guidance executive.
• Document 5 is an email exchange with a representative of the Royal College of Physicians.
• Text exchange 1 is between 2 members of NICE’s guidance executive. The information on pages 2 and 3 is a copied and pasted message received by one of those individuals from a stakeholder.
• Text exchange 2 is a between the same parties as document 4.

Section 40(2) exempts third party personal data from disclosure if disclosure would breach any one of the data protection principles (section 40(3A)). The data protection principles are provided in Article 5 of the General Data Protection Regulation (GDPR). Principle 1(a) states that personal data must be ‘processed lawfully, fairly and in a transparent manner in relation to the data subject’.

Releasing personal information in response to an FOI request is classed as ‘processing’ and can only be done if there is a lawful basis to do so. The lawful bases are outlined in Article 6 of the GDPR. Only (a) consent and (f) legitimate interests are relevant to disclosure under FOIA and are considered below.

On basis (a), we do not have explicit consent for the disclosure of the third parties’ personal data, and in some cases the data subject has stated they do not wish their personal data to be released under FOI.

While section 40(2) and (3A) provide absolute exemption and are therefore not subject to the public interest test, a balancing exercise is required to weigh up the rights and interests of the data subjects against the legitimate interests of disclosure, basis (f). I have considered whether the legitimate interests in disclosure outweigh the interests or fundamental rights and freedoms of the data subjects which require the protection of personal data.

We understand the interest in disclosing information that contributed to NICE’s decision-making in this matter, in the interests of transparency. However, we do not consider that it is necessary to disclose personal data in order to achieve this aim. It is not usual practice to release the personal data of those contributing to guideline development as stakeholders. For example, in the context of stakeholder comments at consultation, the organisational identity is published but not the personal data of those submitting the comments. While this information does not constitute consultation comments, we consider that it is reasonable to apply the same approach. In responding to this request, it is clear which organisation is represented by each third party and we consider that this achieves the necessary transparency.

I do not therefore, believe that the legitimate interests in disclosure of the personal data outweighs their rights and interests as data subjects. Disclosure would therefore breach data protection principle (a) which requires personal data to be processed lawfully, fairly and in a transparent manner in relation to the data subject. Which in turn, means section 40 of the FOIA is engaged and NICE cannot disclose the information requested.

If you have any questions on this response you are welcome to email the enquiry handling team at [NICE request email].

If you are unhappy with this response and want an internal review of how we handled your request, you must write to us within 40 working days of our response. Send your request to: Associate Director, Corporate Office, National Institute for Health and Care Excellence, 2nd Floor, 2 Redman Place, London, E20 1JQ or email: [email address]. When we receive your request, we will send you an acknowledgement within 5 working days.

The Associate Director, Corporate Office, will review your complaint and send you a full reply usually within 20 working days. If you are dissatisfied with the outcome of this review, you can apply directly to the Information Commissioner for a decision at: The Information Commissioner’s Office, Wycliffe House, Water Lane, Wilmslow, Cheshire SK9 5AF.

Kind regards

Helen

Helen Finn (she/her)
Senior communications manager (enquiries)
National Institute for Health and Care Excellence
Level 1A, City Tower | Piccadilly Plaza | Manchester | M1 4BT | United Kingdom
Tel: 44 (0)300 323 0141
Web: http://nice.org.uk

dangos adrannau a ddyfynnir