Nid ydym yn gwybod a yw'r ymateb mwyaf diweddar i'r cais hwn yn cynnwys gwybodaeth neuai peidio - os chi ywHannah Sharland mewngofnodwch a gadael i bawb wybod.

FOI on new ME/CFS guidelines

Hannah Sharland made this Rhyddid Gwybodaeth request to National Institute for Health and Care Excellence

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Hannah Sharland

Dear National Institute for Health and Care Excellence,

This is a request under the Freedom of Information Act 2000.

Please provide a list of all the stakeholders who contacted NICE between the 1st of August 2021 and the 17th of August 2021 to confirm that they did not support the publishing of the new NICE guidelines for diagnosis and treatment of ME/CFS.

Additionally, if this is possible and would not fall under a Section 12 exemption, please provide a copy of the above stakeholders’ correspondence (email, letter, text for example, but not limited to) with NICE that regards the new ME/CFS guidelines and was sent during the above timeframe. If this does fall under exemption, please instead address the first part of my request only.

If any of the above information is already available, please direct me to where I can access this.

I would be exceedingly grateful for any and all help with the above queries and would like to express my deep thanks in advance for your hard work in assisting me to obtain this information.

Yours faithfully,

Hannah Sharland

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

1 Atodiad

Dear Hannah,

 

Reference No: EH-317343

 

FREEDOM OF INFORMATION ACT 2000

 

Thank you for your request, sent to our office on 18 August 2021, in which
you asked NICE for the following information:

 

‘a list of all the stakeholders who contacted NICE between the 1st of
August 2021 and the 17th of August 2021 to confirm that they did not
support the publishing of the new NICE guidelines for diagnosis and
treatment of ME/CFS.’

 

Your request will now be considered 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 time-scale 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: [1]http://nice.org.uk

 

[2]Find out more about the new NICE strategy on our website

 

dangos adrannau a ddyfynnir

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

1 Atodiad

Dear Hannah

 

Reference No: EH-317343

 

FREEDOM OF INFORMATION ACT 2000

 

I am writing in relation to your request for information relating to the
proposed new NICE guidelines on the treatment of ME/CFS.

 

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: [1]http://nice.org.uk

 

[2]Find out more about the new NICE strategy on our website

 

From: National Institute for Health and Care Excellence (NICE)
Sent: 20 August 2021 16:46
To: 'Hannah Sharland' <[FOI #783110 email]>
Subject: EH-317343: Freedom of Information request - FOI on new ME/CFS
guidelines

 

Dear Hannah,

 

Reference No: EH-317343

 

FREEDOM OF INFORMATION ACT 2000

 

Thank you for your request, sent to our office on 18 August 2021, in which
you asked NICE for the following information:

 

‘a list of all the stakeholders who contacted NICE between the 1st of
August 2021 and the 17th of August 2021 to confirm that they did not
support the publishing of the new NICE guidelines for diagnosis and
treatment of ME/CFS.’

 

Your request will now be considered 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 time-scale 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: [3]http://nice.org.uk

 

[4]Find out more about the new NICE strategy on our website

 

dangos adrannau a ddyfynnir

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

1 Atodiad

Dear Hannah

 

In my email of 16 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: [1]http://nice.org.uk

 

[2]Find out more about the new NICE strategy on our website

 

From: National Institute for Health and Care Excellence (NICE)
Sent: 16 September 2021 17:38
To: 'Hannah Sharland' <[FOI #783110 email]>
Subject: RE: EH-317343: Freedom of Information request - FOI on new ME/CFS
guidelines

 

Dear Hannah

 

Reference No: EH-317343

 

FREEDOM OF INFORMATION ACT 2000

 

I am writing in relation to your request for information relating to the
proposed new NICE guidelines on the treatment of ME/CFS.

 

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: [3]http://nice.org.uk

 

[4]Find out more about the new NICE strategy on our website

 

From: National Institute for Health and Care Excellence (NICE)
Sent: 20 August 2021 16:46
To: 'Hannah Sharland' <[5][FOI #783110 email]>
Subject: EH-317343: Freedom of Information request - FOI on new ME/CFS
guidelines

 

Dear Hannah,

 

Reference No: EH-317343

 

FREEDOM OF INFORMATION ACT 2000

 

Thank you for your request, sent to our office on 18 August 2021, in which
you asked NICE for the following information:

 

‘a list of all the stakeholders who contacted NICE between the 1st of
August 2021 and the 17th of August 2021 to confirm that they did not
support the publishing of the new NICE guidelines for diagnosis and
treatment of ME/CFS.’

 

Your request will now be considered 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 time-scale 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: [6]http://nice.org.uk

 

[7]Find out more about the new NICE strategy on our website

 

dangos adrannau a ddyfynnir

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

4 Atodiad

Dear Hannah

Reference No: EH-317343

FREEDOM OF INFORMATION ACT 2000

Thank you for your request for information dated 18 August 2021, made under the Freedom of Information Act 2000 Act (FOIA), in which you asked NICE for the following information:

Please provide a list of all the stakeholders who contacted NICE between the 1st of August 2021 and the 17th of August 2021 to confirm that they did not support the publishing of the new NICE guidelines for diagnosis and treatment of ME/CFS.

Additionally, if this is possible and would not fall under a Section 12 exemption, please provide a copy of the above stakeholders’ correspondence (email, letter, text for example, but not limited to) with NICE that regards the new ME/CFS guidelines and was sent during the above timeframe. If this does fall under exemption, please instead address the first part of my request only.

In considering our response we have interpreted 'stakeholder' to mean stakeholder groups registered for this 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.

We do not hold a list of stakeholders that contacted NICE between 01 August and 17 August 2021 to confirm that they did not support the publication of the new NICE guidelines for diagnosis and treatment of ME/CFS.

However, copies of the requested correspondence 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, the text exchange is between the same parties as document 3.

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 [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

Nid ydym yn gwybod a yw'r ymateb mwyaf diweddar i'r cais hwn yn cynnwys gwybodaeth neuai peidio - os chi ywHannah Sharland mewngofnodwch a gadael i bawb wybod.