#MakeItPublic consultation responses

The request was refused by Health Research Authority.

Dear Health Research Authority,

Annex 2 of the draft Consultation Report “Make it public: transparency and openness in health and social care research”, V1.0, December 2019, contains a list of organisations that responded to the consultation.

Please provide the full responses submitted by 10 of these organisations, listed below.

“Full responses” in this context includes responses given using a Likert scale, free text responses explaining, elaborating on, or providing answers to survey questions, and any other material provided by the 9 organisations, including but not limited to additional text, data, and attached or hyperlinked documents.

Please provide this information as 10 PDF files: one separate file for each of the responding organisations, as listed below.

1 The Association of the British Pharmaceutical Industry (ABPI)
2 The Academy of Medical Sciences (AMS)
3 The Association of Medical Research Charities (AMRC)
4 Cancer Research UK
5 Cochrane UK
6 GlaxoSmithKline
7 Joint submission on behalf of the Medical Research Council (MRC) and the Economic and Social Research Council (ESRC)
8 NIHR Clinical Research Network
9 Sense about Science
10 The emailed response which contained 20 individual Contract Research Organisation (CRO) responses collated by the UK Clinical Research Collaboration (UKCRC)

Note: The UK Clinical Research Collaboration (UKCRC) is not listed as a respondent organisation in the annex, but its submission is referred to within the text of the draft Consultation Report.

Yours faithfully,

Till Bruckner

FOI, HRA (HEALTH RESEARCH AUTHORITY),

Dear Till,

 

Freedom of Information (FOI) Act request

 

Thank you for your email dated 29 December 2019 requesting the following
information:

 

o Ten individual PDF files containing the full responses (including
responses given using a Likert scale, free text responses explaining,
elaborating on, or providing answers to survey questions and any other
material provided  including, but not limited to, additional text,
data and attached or hyperlinked documents) to the “Make it public:
transparency and openness in health and social care research”
consultation that were submitted by the following organisations:

 1. The Association of the British Pharmaceutical Industry (ABPI)
 2. The Academy of Medical Sciences (AMS)
 3. The Association of Medical Research Charities (AMRC)
 4. Cancer Research UK
 5. Cochrane UK
 6. GlaxoSmithKline
 7. Joint submission on behalf of the Medical Research Council (MRC)
and the Economic and Social Research Council (ESRC)
 8. NIHR Clinical Research Network
 9. Sense about Science
10. The emailed response which contained 20 individual Contract
Research Organisation (CRO) responses collated by the UK Clinical
Research Collaboration (UKCRC)

 

Your request is being handled under the Freedom of Information (FOI) Act
and has been referred to the appropriate personnel for investigation.  We
will provide you with a response as soon as possible, but no later than 28
January 2020.

 

Kind regards,

Susannah

     

Freedom of Information

Health Research Authority

HRA | Skipton House, 80 London Road | London | SE1 6LH

T. 0207 972 2487

E. [1][HRA request email]

W. [2]www.hra.nhs.uk

 

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FOI, HRA (HEALTH RESEARCH AUTHORITY),

Dear Till,

 

Freedom of Information (FOI) Act request

 

We are writing in response to your request for information, under the FOI
Act, dated 29 December 2019.  Thank you for your enquiry. You requested
the following information:

 

o Ten individual PDF files containing the full responses (including
responses given using a Likert scale, free text responses explaining,
elaborating on, or providing answers to survey questions and any other
material provided  including, but not limited to, additional text,
data and attached or hyperlinked documents) to the “Make it public:
transparency and openness in health and social care research”
consultation that were submitted by the following organisations:

 1. The Association of the British Pharmaceutical Industry (ABPI)
 2. The Academy of Medical Sciences (AMS)
 3. The Association of Medical Research Charities (AMRC)
 4. Cancer Research UK
 5. Cochrane UK
 6. GlaxoSmithKline
 7. Joint submission on behalf of the Medical Research Council (MRC)
and the Economic and Social Research Council (ESRC)
 8. NIHR Clinical Research Network
 9. Sense about Science
10. The emailed response which contained 20 individual Contract
Research Organisation (CRO) responses collated by the UK Clinical
Research Collaboration (UKCRC)

 

Our response is as follows:

 

o The HRA has published [1]guidance on how we will manage our
consultations which includes details regarding how we will share
responses at the end of the consultation. The guidance makes clear
that a summary of responses will be produced ideally 12 weeks after a
formal consultation has closed. The guidance also makes clear that all
comments made on behalf of an organisation will normally be published
and attributable. For comments from individuals, these will be
summarised in such a way to ensure the individual is not identified
(unless they have given specific consent for their information to be
shared).

 

o We had initially anticipated that the responses to the Make it Public
consultation, and the strategy they informed, would be published in
December 2019. Our Make it Public strategy was agreed, in principle,
by the HRA’s Board when it met in December; however due to the General
Election the Board postponed its formal approval. The Board will meet
again in early February 2020 to agree the implementation plan for the
new strategy and we will make an announcement, including publishing
responses to our consultation, shortly after this.

 

o We have therefore applied FOIA exemption Section 22 – information held
with a view to its future publication and refused your request.

 

o When publishing the responses personal identifiable information will
be redacted in line with the principles of the Data Protection Act /
General Data Protection Regulation, and comments from individuals will
be summarised in line with the guidance detailed above.

 

o Please note, Section 22 is a qualified exemption and as such the
public interest test must be considered in this instance. The HRA
accepts there is public interest in the release of information in
relation to consultations and, as stated above, will do this following
the February Board meeting.

 

o The HRA is therefore satisfied the public interest lies in the
publication of the responses in due course and in line with our
guidance detailed above.

 

We hope that this information is helpful to you, but should you require
further clarification, please let us know.

 

If you are unhappy about the way in which your request has been handled,
the HRA has an internal complaints procedure through which you can raise
any concerns.  Further details of this procedure may be obtained by
contacting the Complaints Manager via [2][email address].  If you
are dissatisfied with the outcome of the complaints procedure, you can
apply to the Information Commissioner’s Office (ICO), who will consider
whether we, as a public authority, have complied with its obligations
under the Act, and can require the HRA to remedy any problems.  You can
find out more about how to do this, and about the Act in general, on their
website [3]www.ico.org.uk.  Complaints should be sent to:

FOI Complaints Resolution – Information Commissioner’s Office

Wycliffe House, Water Lane, Wilmslow, Cheshire SK9 5AF

 

Kind regards,

Susannah

 

Freedom of Information

Health Research Authority

HRA | Skipton House, 80 London Road | London | SE1 6LH

T. 0207 972 2487

E. [4][HRA request email]

W. [5]www.hra.nhs.uk

 

Our latest guidance on how the upcoming GDPR affects health research is
[6]now live

 

Sign up to receive our newsletter [7]HRA Latest.

 

From: FOI, HRA (HEALTH RESEARCH AUTHORITY)
Sent: 03 January 2020 10:39
To: 'Till Bruckner' <[FOI #630929 email]>
Subject: FOI acknowledgement - 1920/FOI/059

 

Dear Till,

 

Freedom of Information (FOI) Act request

 

Thank you for your email dated 29 December 2019 requesting the following
information:

 

o Ten individual PDF files containing the full responses (including
responses given using a Likert scale, free text responses explaining,
elaborating on, or providing answers to survey questions and any other
material provided  including, but not limited to, additional text,
data and attached or hyperlinked documents) to the “Make it public:
transparency and openness in health and social care research”
consultation that were submitted by the following organisations:

11. The Association of the British Pharmaceutical Industry (ABPI)
12. The Academy of Medical Sciences (AMS)
13. The Association of Medical Research Charities (AMRC)
14. Cancer Research UK
15. Cochrane UK
16. GlaxoSmithKline
17. Joint submission on behalf of the Medical Research Council (MRC)
and the Economic and Social Research Council (ESRC)
18. NIHR Clinical Research Network
19. Sense about Science
20. The emailed response which contained 20 individual Contract
Research Organisation (CRO) responses collated by the UK Clinical
Research Collaboration (UKCRC)

 

Your request is being handled under the Freedom of Information (FOI) Act
and has been referred to the appropriate personnel for investigation.  We
will provide you with a response as soon as possible, but no later than 28
January 2020.

 

Kind regards,

Susannah

     

Freedom of Information

Health Research Authority

HRA | Skipton House, 80 London Road | London | SE1 6LH

T. 0207 972 2487

E. [8][HRA request email]

W. [9]www.hra.nhs.uk

 

Our latest guidance on how the upcoming GDPR affects health research is
[10]now live

 

Sign up to receive our newsletter [11]HRA Latest.
 

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