Patient involvement in the co-design of care.data
Phil Booth made this Freedom of Information request to NHS England This request has been closed to new correspondence. Contact us if you think it should be reopened.
Dear NHS England,
I would like to make a request under the FOI Act.
For the purposes of the Act, please take the date of your receipt of this request as 30th January 2014.
With reference to the Tweet by your Director of Patients and Information at 3:34pm on the 30th Jan 2014:
"@DavidGilbert43 @tim2040 David, not ignoring patient voice - participation critical and has been all along in co-design of data initiative"
Please would you provide the following:
1) The time, date and location of every meeting between patients and members of NHS England* working on the care.data programme;
2) Copies of any and all written materials (paper or digital) sent to patients in advance of those meetings, any such materials provided at the meetings, and any such materials circulated to patients following the meetings;
3) Copies of any e-mails and minutes relating to the meetings;
4) Copies of any documents that indicate a substantial change being made to the design of care.data following patient participation.
*By NHS England I also mean the NHS Commissioning Board, i.e. the period before NHS England changed its name.
I would be grateful if you would send me the requested information promptly and in any event not later than the twentieth working day following the date of receipt of my request.
If my request is denied in whole or in part, or specific items within the responses are withheld from disclosure, then you must justify all deletions by reference to specific exemptions of the Act, as per Section 17 of the Act. Where you rely on a qualified exemption to withhold disclosure, you are obliged to consider the public interest in your decision and the refusal notice must explain not only which exemption applies and why, but also the public interest arguments addressed in reaching the decision.
Yours faithfully,
Phil Booth
Thank you for contacting NHS England.
Your Freedom of Information (FOI) request, which we received on 30 January
2014 has been allocated a reference number of SDR 204179. Please quote
this reference in any further communication regarding this matter.
Your FOI request has been passed to the Case Management Team and a Case
Officer will acknowledge your request within two working days. We will
respond to your FOI request within 20 working days in line with the FOI
Act 2000.
If you require any further information or wish to speak to someone about
your request, please contact NHS England at the email address and
telephone number shown below.
Yours Faithfully
NHS England
PO Box 16738 | Redditch | B97 9PT
0300 3 11 22 33
[1][email address]
[2]www.england.nhs.uk
Our reference: SDR-204179: Acknowledgement
Dear Mr Booth,
Thank you for your Freedom of Information (FOI) request, dated 30 January
2014.
Please be assured that your request is being dealt with under the terms of
the Freedom of Information Act 2000 and will be answered within twenty
working days.
If you have any queries about this request or wish to contact us again,
please email [1][email address] and the message will be
forwarded appropriately. Please remember to quote the above reference
number in any future communications.
Please do not reply directly to this email. This message has been sent
from a central mailbox and incoming messages will not be received.
Yours sincerely,
Chloe Wilkins
Freedom of Information
NHS England
Tel: 0300 311 2233
Email: [2][email address]
Website: [3]www.england.nhs.uk
Address: NHS England, PO Box 16738, REDDITCH, B97 9PT
References
Visible links
1. mailto:[email address]
2. mailto:[email address]
3. http://www.england.nhs.uk/
Dear Mr Booth,
Re: Freedom of Information request (Our Ref: SDR – 204179)
Thank you for your Freedom of Information (FOI) request dated 30 January
2014.
Your exact request was,
“With reference to the Tweet by your Director of Patients and Information
at 3:34pm on the 30th Jan 2014:
"@DavidGilbert43 @tim2040 David, not ignoring patient voice -
participation critical and has been all along in co-design of data
initiative"
Please would you provide the following:
1) The time, date and location of every meeting between patients and
members of NHS England* working on the care.data programme;
2) Copies of any and all written materials (paper or digital) sent to
patients in advance of those meetings, any such materials provided at the
meetings, and any such materials circulated to patients following the
meetings;
3) Copies of any e-mails and minutes relating to the meetings;
4) Copies of any documents that indicate a substantial change being made
to the design of care.data following patient participation.
*By NHS England I also mean the NHS Commissioning Board, i.e. the period
before NHS England changed its name.”
NHS England does not hold this information.
There have been no meetings between NHS England and patients directly.
However, NHS England has held meetings with a range of patient
representative groups and charities, and continues to work with a wide
range of charities and stakeholders for on-going engagement.
An example of this engagement includes the British Medical Association
(BMA) Patient Liaison Group providing feedback on drafts of the ‘Better
Information means Better Care’ leaflet. These comments were incorporated
into the leaflet, which can be viewed at the following web link:
[1]http://www.nhs.uk/NHSEngland/thenhs/reco...
You can find more information about BMA Patient Liaison Group at
[2]http://bma.org.uk/about-the-bma/how-we-w...
I hope this information is helpful. However, if you are dissatisfied, you
have the right to ask for an internal review by writing to us, within two
months of the date of this letter, to:
NHS England
PO Box 16738
REDDITCH
B97 9PT
Email: [3][email address]
Please quote the reference number SDR-204179 in any future communications.
If you are not content with the outcome of the internal review, you have
the right to apply directly to the Information Commissioner for a
decision. The Information Commissioner’s Office (ICO) can be contacted at:
The Information Commissioner’s Office
Wycliffe House
Water Lane
Wilmslow
Cheshire
K9 5AF
Telephone: 0303 123 1113
Email: [4][email address].uk
Website: www.ico.gov.uk
Please note there is no charge for making an appeal.
Please do not reply to this email. It has been sent from a central mailbox
and incoming messages will not be received.
Yours sincerely,
Chloe Wilkins
Freedom of Information
NHS England
Tel: 0300 311 2233
Email: [5][email address]
Website: [6]www.england.nhs.uk
Address: NHS England, PO Box 16738, REDDITCH, B97 9PT
References
Visible links
1. http://www.nhs.uk/NHSEngland/thenhs/reco...
2. http://bma.org.uk/about-the-bma/how-we-w...
3. mailto:[email address]
4. mailto:[email address]
5. mailto:[email address]
6. http://www.england.nhs.uk/
Dear FOI England (NHS ENGLAND),
In your reply dated 18 February, you say:
"NHS England does not hold this information.
There have been no meetings between NHS England and patients directly.
However, NHS England has held meetings with a range of patient representative groups and charities, and continues to work with a wide range of charities and stakeholders for on-going engagement."
It is, of course, surprising that NHS England has not met with any patients directly up to this point - but your answer does not provide any of the information I asked about the sort of 'patient participation' that NHS England claims to have done / be doing.
I will therefore clarify. Would you please provide the following:
1) The time, date and location of every meeting between "patient representative groups", charities, "stakeholders" and members of NHS England* working on the care.data programme;
2) Copies of any and all written materials (paper or digital) sent to these organisations or representatives of them in advance of those meetings, any such materials provided at the meetings, and any such materials circulated to participants following the
meetings;
3) Copies of any e-mails and minutes relating to the meetings;
4) Copies of any documents that indicate a substantial change being made to the design of care.data following engagement with these organisations.
I note that NHS England has claimed on a number of occasions to have disseminated materials to a list of "350,000 patient groups, charities, and voluntary organisations", so:
5) Please provide a copy of this list of organisations as structured data, i.e. a spreadsheet or digital file exported from a database, and a copy of all of the information that has been disseminated to them.
*By NHS England I also mean the NHS Commissioning Board, i.e. the period before NHS England changed its name.
I would be grateful if you would send me the requested information promptly and in any event not later than the twentieth working day following the date of receipt of this clarification of my request.
If my request is denied in whole or in part, or specific items within the responses are withheld from disclosure, then you must justify all deletions by reference to specific exemptions of the Act, as per Section 17 of the Act. Where you rely on a qualified
exemption to withhold disclosure, you are obliged to consider the public interest in your decision and the refusal notice must explain not only which exemption applies and why, but also the public interest arguments addressed in reaching the decision.
Yours faithfully,
Phil Booth
Dear Mr Booth,
Our reference: SDR-217048 - Acknowledgement
Thank you for your Freedom of Information (FOI) request dated 22 February
2014, in response to our original disclosure reference SDR-204179.
Please be assured that your request is being dealt with under the terms of
the Freedom of Information Act 2000 and will be answered within twenty
working days.
If you have any queries about this request or wish to contact us again,
please email [1][email address] and the message will be
forwarded appropriately. Please remember to quote the above reference
number in any future communications.
Please do not reply directly to this email. This message has been sent
from a central mailbox and incoming messages will not be received.
Yours sincerely,
Michelle Butterworth
Freedom of Information
NHS England
Tel: 0300 311 2233
Email: [2][email address]
Website: [3]www.england.nhs.uk
Address: NHS England, PO Box 16738, REDDITCH, B97 9PT
References
Visible links
1. mailto:[email address]
2. mailto:[email address]
3. http://www.england.nhs.uk/
Dear Mr Booth,
Our reference: SDR-217048 - Acknowledgement
Thank you for your Freedom of Information (FOI) request dated 22 February
2014.
NHS England may hold information relevant to your request. However, we
are unable to begin processing your request without further clarification.
Under Section 1(3) of the FOI Act, an authority is not obliged to comply
with an FOI request when it reasonably requires further information in
order to identify and locate the information requested.
With this in mind, can you please clarify if you require information
relating to patient groups only, or all of the stakeholders we have
engaged with? In scoping the request, we have identified several groups,
but believe that Section 12 (time / cost compliance) may apply if all
groups are included. Therefore our care.data team would appreciate your
clarifying and specification in order to give you as much information as
possible.
Please be assured we are keen to assist with your request. However, I
cannot guarantee that Section 12 or any other exemptions under the FOI act
will not apply to any further information requested.
Yours sincerely,
Michelle Butterworth
Freedom of Information
NHS England
Tel: 0300 311 2233
Email: [1][email address]
Website: [2]www.england.nhs.uk
Address: NHS England, PO Box 16738, REDDITCH, B97 9PT
References
Visible links
1. mailto:[email address]
2. http://www.england.nhs.uk/
Dear FOI England (NHS ENGLAND),
Thank you for your reply.
I appreciate that my previous clarification, in reply to your initial response, widened the scope of my request. If this turns out to be too broad, please would you provide the following in order of priority:
1) The complete list of "350,000 patient groups,
charities, and voluntary organisations" mentioned in numerous public statements about "awareness-raising activities". Please provide this as structured data, i.e. a spreadsheet or digital file exported from a database.
2) Copies of any documents or digital files that have been sent to the groups referred to in (1), by which I mean the information that has been provided to them to cascade to their members - not individual correspondence.
3) Copies of any documents that indicate a substantial change being made to the design of care.data following engagement with any of the organisations mentioned in (1).
4) The date and location of every meeting between "patient representative groups", charities, "stakeholders" and members of NHS England* working on the care.data programme. If providing a complete list of dates and locations engages Section 12, please could you provide a list of every "stakeholder" that is not already covered by (1).
To be absolutely clear, if Section 12 is engaged I would like to receive all of the information that you have collated up to that point, starting with (1) and working your way down the list.
*By NHS England I also mean the NHS Commissioning Board, i.e. the period before NHS England changed its name.
I would be grateful if you would send me the requested information promptly and in any event not later than the twentieth working day following the date of receipt of this clarification of my request.
If my request is denied in whole or in part, or specific items within the responses are withheld from disclosure, then you must justify all deletions by reference to specific exemptions of the Act, as per Section 17 of the Act. Where you rely on a qualified
exemption to withhold disclosure, you are obliged to consider the public interest in your decision and the refusal notice must explain not only which exemption applies and why, but also the public interest arguments addressed in reaching the decision.
Yours sincerely,
Phil Booth
Dear Mr Booth,
Re: Freedom of Information request (Our Ref: SDR 217048)
Thank you for your Freedom of Information (FOI) request dated 22 February
2014.
Your exact request was:-
“1) The time, date and location of every meeting between "patient
representative groups", charities, "stakeholders" and members of NHS
England* working on the care.data programme;
2) Copies of any and all written materials (paper or digital) sent to
these organisations or representatives of them in advance of those
meetings, any such materials provided at the meetings, and any such
materials circulated to participants following the meetings;
3) Copies of any e-mails and minutes relating to the meetings;
4) Copies of any documents that indicate a substantial change being made
to the design of care.data following engagement with these organisations.
I note that NHS England has claimed on a number of occasions to have
disseminated materials to a list of "350,000 patient groups, charities,
and voluntary organisations", so:
5) Please provide a copy of this list of organisations as structured data,
i.e. a spread sheet or digital file exported from a database, and a copy
of all of the information that has been disseminated to them.”
NHS England holds some information relevant to your request.
In response to Question 1, NHS England can confirm that we do not hold a
spread sheet or digital file containing this information.
Information was included in the Patient and Public Voice Bulletin Health
and Care Voluntary Sector Strategic Partners Bulletin. The Health and Care
Voluntary Sector Strategic Partners are national organisations and
umbrella bodies who act as a conduit to send out information to their
further networks around the country, creating a ripple effect. The patient
and public voice team in NHS England advise that this network can reach
350,000 groups and organisations.
There are 21 voluntary sector strategic partners. Most partners are groups
or consortia of organisations so the number of individual VCS
organisations directly involved is around 45.
Of these, many are network or membership bodies, for example National
Voices has a membership of approximately 250 health and care charities;
AGE UK has a network of about 150 federated members; NAVCA has a
membership of approximately 200 members, each of which has a membership of
100-500 members. If you multiply up the members you get to a communication
network of about 350,000 groups and organisations.
In response to Question 2, please find attached 3 documents which relate
to this question.
In response to Question 3, NHS England does not hold this information.
In response to Question 4, We have engaged with a range of stakeholders
including the Richmond Group an alliance of patient charities; the
Association of Medical Research Charities; the Wellcome Trust; Asthma UK;
Diabetes UK; the British Lung Foundation and the Genetic Alliance UK; the
British Heart Foundation; Cancer Research UK; National Voices, Sense;
Mencap; the BMA; the RCGP; the BMA’s Patient Liaison Group; the ICO; the
MDOs; the RCP; the GMC; the Patients Association; Healthwatch; the
Patient’s Association; RNIB, Action on Hearing Loss. We have meetings
organised with the International Alliance of Patient Organisations with
Homeless Link and are seeking to engage with Shelter and Carers UK.
Members of the team have also attended NHS Values summits, Health and Care
Voluntary Sector Strategic Partners Programme working days, and expos,
such as Ehi live in November 2013.
NHS England is working with patients and professional groups including the
BMA, RCGP and Healthwatch to develop additional practical steps to
promote awareness with patients and the public, and ensure information is
accessible and reaches all sections of the community, including people
with disabilities.
In response to Question 5, NHS England may hold information relevant to
your request. However, to comply with your request as it is currently
framed would exceed the cost limit as set out in Section 12(1) of the FOI
Act. Section 12(1) states that a public authority can refuse a request if
complying with it would exceed the appropriate limit of £450 (which
represents 18 working hours). This represents the estimated cost of one
person spending this time in determining whether the information is held,
and locating, retrieving and extracting the information.
In processing your request, per your instructions we have provided as much
information as possible within the 18 hour, £450 time / cost compliance
limit. To start extraction and collation of data you have requested for
Question 5 would exceed these limits.
If you were to refine your request for information within more specific
margins, for example by asking fewer questions, then we may be able to
continue processing your request. However, I cannot guarantee that
Section 12 or any other exemptions will not apply to any information
requested.
I hope this information is helpful. However, if you are dissatisfied, you
have the right to ask for an internal review by writing to us, within two
months of the date of this letter, to:
NHS England
PO Box 16738
REDDITCH
B97 9PT
Email: [1][email address]
Please quote the reference number SDR 217048 in any future communications.
If you are not content with the outcome of the internal review, you have
the right to apply directly to the Information Commissioner for a
decision. The Information Commissioner’s Office (ICO) can be contacted at:
The Information Commissioner’s Office
Wycliffe House
Water Lane
Wilmslow
Cheshire
K9 5AF
Telephone: 0303 123 1113
Email: [2][email address].uk
Website: [3]www.ico.gov.uk
Please note there is no charge for making an appeal.
Please be aware that in line with the Information Commissioner’s directive
on the disclosure of information under the FOI Act, your request will be
anonymised and published on our website as part of our disclosure log.
Please do not reply directly to this email. This message has been sent
from a central mailbox and incoming messages will not be received.
Yours sincerely,
Michelle Butterworth
Freedom of Information
NHS England
Tel: 0300 311 2233
Email: [4][email address]
Website: [5]www.england.nhs.uk
Address: NHS England, PO Box 16738, REDDITCH, B97 9PT
References
Visible links
1. mailto:[email address]
2. mailto:[email address]
3. http://www.ico.gov.uk/
4. mailto:[email address]
5. http://www.england.nhs.uk/
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