Non publication of "finalised"guidelines for ME/CFS

Adrienne Wooding made this Rhyddid Gwybodaeth request to National Institute for Health and Care Excellence

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Roedd y cais yn llwyddiannus.

Dear National Institute for Health and Care Excellence,

I am writing to request a copy of all communications, file notes, emails and meeting notes written or recorded in relation to:

1/ The NICE decision that was made on or about 17th August 2021, to withhold publication of the updated guideline for ME/CFS, that was due to be released on 18th August 2021.

2/ In particular, the communications surrounding the decision made by NICE, not to follow it's own policy and proceedures for the design, development, implementation and release of a guideline.

The dates for which I am seeking this information are from 1 August 2021 to 5 October 2021.

Yours faithfully,

Adrienne Wooding

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

Dear Adrienne

Reference no: EH-318553-F6R8T0

Thank you for confirming that it is the request below for which you require a response. Please note the revised reference number above.

We will now consider your request and you will receive a response within the statutory timescale of 20 working days as defined by the Act, subject to the information not being exempt or containing a reference to a third party. In some circumstances we may be unable to achieve this deadline. If this is likely you will be informed and given a revised timescale at the earliest opportunity.

I would like to take this opportunity to thank you for your interest in NICE.

Yours sincerely,

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

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

1 Atodiad

Dear Adrienne

 

Reference No: EH-318553

 

FREEDOM OF INFORMATION ACT 2000

 

Thank you for your request for information dated 04 October 2021, made
under the Freedom of Information Act 2000 Act (FOIA), in which you asked
NICE for all communications, file notes, emails and meeting notes written
or recorded in relation to:

 

1. The NICE decision that was made on or about 17th August 2021, to
withhold publication of the updated guideline for ME/CFS, that was due to
be released on 18th August 2021.

 

2. In particular, the communications surrounding the decision made by
NICE, not to follow its own policy and procedures for the design,
development, implementation and release of a guideline.

 

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 information are attached. 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.

 

For clarity and context:

•                     Document 1 is an internal email exchange between
members of NICE’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.

•                     Document 7 contains an extract from the minutes of
the guidance executive meeting at which the decision to pause publication
was taken.

•                     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 the 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 [1][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: [2][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: [3]http://nice.org.uk

 

 

 

 

 

 

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