NHS Patient data sharing with US & Asia

The request was partially successful.

Dear Health and Social Care Information Centre,

I would be grateful if you would provide a list of of NHS patient data recipients, whose headquarters or main organisational location is in the United States or People's Republic of China and who have received or had made available, any data since 1st April 2012.

Please include the date on which the sharing agreement was entered into and further, list the data items which were made available or are planned to be made available in any format other than at merged, aggregated levels greater than your small number measures, including completely anonymised individual level data, and list the total number of patient records in each (planned) release(s).

Please consider for this all data sharing, whether offered directly through HSCIC, cloud-based distribution, through an intermediary, in support of a third-party such as but not exclusive to the University of Manchester, or another method.

Recipients may be for example, but not exclusive to:

i. Kaiser Permanente and/or the University of California, San Francisco (UCSF)

ii. US Dept Veterans Health Administration

iii. National Institutes of Health (NIH): NIH, the US medical research agency, including 27 Institutes and Centers, the component of the U.S. Department of Health and Human Services

iv.Peking University Health Sciences Center

v. The University of Hong Kong

Thank you for your time and consideration.
Yours faithfully,

Jen Persson

Enquiries CRM,

 

Ref: NIC-256894-N1H4V

 

 

 

Dear Jen Persson,

 

I am writing to acknowledge that your request for information was received
by The Health and Social Care Information Centre  on 14/03/2014 and is
currently being considered. 

 

If The HSCIC is able to provide you with the information you have
requested, then under the Freedom of Information (FOI) Act you are
entitled to receive it promptly and in any event no later than the 20th
working day following the date of receipt. However, we may need to contact
you to clarify your request, if this is required we aim to do this
promptly but no later than 7 days after receiving your initial request for
information.

 

May I take this opportunity to explain the FOI Act in more detail. The Act
provides a 'General right of access to information held by public
authorities. However, it also defines a number of exemptions which may
prevent the release of some or all of the information you have requested.
Therefore, the HSCIC will assess your information request in light of any
relevant exemptions.

 

If exemptions do apply, then the HSCIC may decide not to release all, or
part, of the information you have requested. I shall inform you if this is
the case, and advise you of your rights of appeal.

 

If the information you request contains reference to a third party then
they may be consulted prior to a decision being taken as to whether to
release the information to you.

 

The response to your request will be sent to you by email, however if you
require your response in any other format, please contact me to discuss a
suitable format.

 

The HSCIC will not normally charge a fee to provide you with the
information you have requested, unless the cost of dealing with your
request is more than £450 as outlined in Section 12 of the FOI Act and
Section 3 of the The FOI and Data Protection (Appropriate Limit and Fees)
Regulations 2004. If it appears likely that your request will cost more,
then the HSCIC is able to refuse to supply the information.  As per our
obligations under Section 16 of the FOI Act, every effort will be made to
provide you with details of how you may be able to reframe your request in
order for us to complete the required work within the (£450 / 18 person
hours) cost limit.

 

If you have any queries or should you wish to make a compliant about the
manner in which your request is being processed then please do not
hesitate to contact me at the above address in the first instance. Any
complaints will be investigated in accordance with the HSCIC complaints
procedure.

 

Further information about your rights under the Freedom of Information
Act, is available from the Information Commissioner's Office, Wilmslow,
Cheshire and on the HSCIC's website.

 

Kind Regards,

Contact Centre Team
Health and Social Care Information Centre
Vantage House
40 Aire Street
Leeds
LS1 4HT

0845 300 6016
Email: [1][HSCIC request email]
[2]http://www.hscic.gov.uk

show quoted sections

Enquiries CRM,

1 Attachment

 

Ref: NIC-256894-N1H4V

Dear Jen,

Please see the attached response from our Information Governance team. 

Kind Regards,

Matthew West

Contact Centre Team
Health and Social Care Information Centre
1 Trevelyan Square
Boar Lane
Leeds
LS1 6AE

0845 300 6016
Email: [1][HSCIC request email]
[2]http://www.hscic.gov.uk

show quoted sections

Dear Enquiries CRM,
Thank you for your reply. Whilst I find it surprising that the territory information is not readily available and that you say "providing this information since April 2012 would require a full manual review of all contractual documents to confirm their contents", I appreciate that you do not wish to provide information now, which is already planned for review and public release.

However since the PWC review you refer to will cover the time period since April 2012 but end March 2013, there will be a time gap since April 2013, compared with my request.

I appreciate that their review for publication at the end of May may cover some of my request. But I wish it to include recipients to the end of December 2013.

Please note that the 3rd April published review which is already in the public domain, does not meet my request, because it does not specify territory, nor data items released.

If the future reviews by Sir Nick Partridge nor that by PWC will answer this, then I appeal and ask this is treated separately, but suggest three alternatives.

I understand that the future audit by Sir Nick Partridge and that of PWC will provide further information on named data recipients. Therefore:

Alternative one:
May I therefore respectfully suggest that these future reviews, unlike the last, should indicate the location of each recipient organisation? You will appreciate that a simple company name, does not clarify the organisation's main business which may be quite different within a single enterprise, at each company location and between countries. Therefore the recipient organisation is not sufficiently transparent.

Plus I would like to ask for the information separately covering the gap between March 2013 and December 2013.

If the upcoming reviews have already decided to shield location name, then I hereby appeal your reply and ask it be processed entirely separately, as below.

Alternative two:
I would like to ask that you run a query specific to this FOI request against the territory field the data applicant must complete, which indicates geography. Plus include any organisation which has its own method of access, to SUS, HES, or through HDIS.

In order to make this as least time consuming as possible, may I suggest that I would be happy to sort through locations myself, if the complete query indicates simply country or territory, and you need not exclude other places, or run it excluding Europe. I will be happy to filter and sort myself.

This assumes you can release them electronically. I am content to wait until parallel timing with the release of the upcoming audits; i.e. the end of May 2014.

Third alternative: If these are kept entirely on paper, then I will be happy to attend a meeting at time and place convenient to you, to review the application files in person and in fewer than 4 hours.

i. Date of application or released
ii. Org name
iii. Org location
iv. Data items released
v. Locations for applications which included the territories of the Americas and Asia.
vi. Time Period: It should include the run dates April 2012 until the end of December 2013.

Yours sincerely,

Jen Person

Enquiries CRM,

 

Ref: NIC-265335-W3M0R

 

 

 

Dear Jen Persson,

I am writing to acknowledge that your request for information was received
by The Health and Social Care Information Centre on 15/04/2014 and is
currently being considered. 

If The HSCIC is able to provide you with the information you have
requested, then under the Freedom of Information (FOI) Act you are
entitled to receive it promptly and in any event no later than the 20th
working day following the date of receipt. However, we may need to contact
you to clarify your request, if this is required we aim to do this
promptly but no later than 7 days after receiving your initial request for
information.

 

May I take this opportunity to explain the FOI Act in more detail. The Act
provides a 'General right of access to information held by public
authorities. However, it also defines a number of exemptions which may
prevent the release of some or all of the information you have requested.
Therefore, the HSCIC will assess your information request in light of any
relevant exemptions.

 

If exemptions do apply, then the HSCIC may decide not to release all, or
part, of the information you have requested. I shall inform you if this is
the case, and advise you of your rights of appeal.

 

If the information you request contains reference to a third party then
they may be consulted prior to a decision being taken as to whether to
release the information to you.

 

The response to your request will be sent to you by email, however if you
require your response in any other format, please contact me to discuss a
suitable format.

 

The HSCIC will not normally charge a fee to provide you with the
information you have requested, unless the cost of dealing with your
request is more than £450 as outlined in Section 12 of the FOI Act and
Section 3 of the The FOI and Data Protection (Appropriate Limit and Fees)
Regulations 2004. If it appears likely that your request will cost more,
then the HSCIC is able to refuse to supply the information.  As per our
obligations under Section 16 of the FOI Act, every effort will be made to
provide you with details of how you may be able to reframe your request in
order for us to complete the required work within the (£450 / 18 person
hours) cost limit.

 

If you have any queries or should you wish to make a compliant about the
manner in which your request is being processed then please do not
hesitate to contact me at the above address in the first instance. Any
complaints will be investigated in accordance with the HSCIC complaints
procedure.

 

Further information about your rights under the Freedom of Information
Act, is available from the Information Commissioner's Office, Wilmslow,
Cheshire and on the HSCIC's website.

 

Kind Regards,

Contact Centre Team
Health and Social Care Information Centre
Vantage House
40 Aire Street
Leeds
LS1 4HT

0845 300 6016
Email: [1][HSCIC request email]
[2]http://www.hscic.gov.uk

show quoted sections

Enquiries CRM,

 

Ref: NIC-265335-W3M0R

 

 

 

Dear Jen Persson,

 

I am writing to acknowledge that your request for information was received
by The Health and Social Care Information Centre  on 16/04/2014

and is currently being considered. 

If The HSCIC is able to provide you with the information you have
requested, then under the Freedom of Information (FOI) Act you are
entitled to receive it promptly and in any event no later than the 20th
working day following the date of receipt. However, we may need to contact
you to clarify your request, if this is required we aim to do this
promptly but no later than 7 days after receiving your initial request for
information.

 

May I take this opportunity to explain the FOI Act in more detail. The Act
provides a 'General right of access to information held by public
authorities. However, it also defines a number of exemptions which may
prevent the release of some or all of the information you have requested.
Therefore, the HSCIC will assess your information request in light of any
relevant exemptions.

 

If exemptions do apply, then the HSCIC may decide not to release all, or
part, of the information you have requested. I shall inform you if this is
the case, and advise you of your rights of appeal.

 

If the information you request contains reference to a third party then
they may be consulted prior to a decision being taken as to whether to
release the information to you.

 

The response to your request will be sent to you by email, however if you
require your response in any other format, please contact me to discuss a
suitable format.

 

The HSCIC will not normally charge a fee to provide you with the
information you have requested, unless the cost of dealing with your
request is more than £450 as outlined in Section 12 of the FOI Act and
Section 3 of the The FOI and Data Protection (Appropriate Limit and Fees)
Regulations 2004. If it appears likely that your request will cost more,
then the HSCIC is able to refuse to supply the information.  As per our
obligations under Section 16 of the FOI Act, every effort will be made to
provide you with details of how you may be able to reframe your request in
order for us to complete the required work within the (£450 / 18 person
hours) cost limit.

 

If you have any queries or should you wish to make a compliant about the
manner in which your request is being processed then please do not
hesitate to contact me at the above address in the first instance. Any
complaints will be investigated in accordance with the HSCIC complaints
procedure.

 

Further information about your rights under the Freedom of Information
Act, is available from the Information Commissioner's Office, Wilmslow,
Cheshire and on the HSCIC's website.

 

Kind Regards,

Contact Centre Team
Health and Social Care Information Centre
Vantage House
40 Aire Street
Leeds
LS1 4HT

0845 300 6016
Email: [1][HSCIC request email]
[2]http://www.hscic.gov.uk

show quoted sections

Dear Enquiries CRM,

I wonder if you have been able to review my request and what approach may work best for you to fulfill it? If you are able to let me know your decision, I would much appreciate it.

Thank you for your consideration.

Yours sincerely,

Jen Person

Enquiries CRM,

 

Ref: NIC-265335-W3M0R

Dear Jen,

Many thanks for you email requesting an update.

I can confirm that we have received your request and it is currently being
considered in line with the acknowledgement email you have received from
the HSCIC and you will receive a response within the 20 working days
allowed.

I hope this helps.

Kind Regards,

Matthew West

Contact Centre Team
Health and Social Care Information Centre
1 Trevelyan Square
Boar Lane
Leeds
LS1 6AE

0845 300 6016
Email: [1][HSCIC request email]
[2]http://www.hscic.gov.uk

show quoted sections

Enquiries CRM,

1 Attachment

 

Ref: NIC-265335-W3M0R

Dear Jen,

Many thanks for your enquiry, please find our full response attached. 

Kind Regards,

Joanne Vause

Contact Centre Team
Health and Social Care Information Centre
1 Trevelyan Square
Boar Lane
Leeds
LS1 6AE

0845 300 6016
Email: [1][HSCIC request email]
[2]http://www.hscic.gov.uk

show quoted sections

Dear Enquiries CRM,
Ref: original FOI request March 13th 2014 ref:NIC-256894-N1H4V and your follow up NIC-265335-W3M0R

Thank you for your reply.
The response of 15th April and May 16th does not meet my FOI request NIC-256894-N1H4V because:

a) Content: the published register (http://www.hscic.gov.uk/media/13787/Regi... does not make any data recipient geographical reference, or list the data items in each release which were made at individual level, nor show the total number of patients' data per release, as requested in my FOI request NIC-256894-N1H4V of March 13th.

b) Dates: "My colleague’s letter of the 15th April refers to both the Partridge Review and the Data Release register which cover the full period in question." You state that therefore, my request will be covered by combining the past and the upcoming audits, including the information not yet released in the public domain. This is not the case. Your reply of 15th April confirmed the upcoming Partridge review will cover releases only until March 31st 2013. That 2012-13 audit will further only meet my request if geographical and data quantity references are included for receiving organisations. If that will be the case, please consider for my FOI request for applications since April 1st 2013 only.

This is because the existing register of releases since April 1st 2013, (published 3rd April 2014) does not show the requested content of my FOI request.

I made reference to territory in reply to your response of April 16th 2014 as I hoped, following your suggestion, to offer a helpful way to limit the search criteria without you having to do a manual review of the applications, as your 15th April reply suggested would be necessary. I see from the sample application form, territory for the data use, is a field the applicant should complete. (ref: http://www.hscic.gov.uk/dlesapplications)

Thank you for helping me understand that organisation location and territory of use may not be the same. It may be my request needs to consider both.

As I am unfamiliar with the internal geographic terms used, instead I clarify why I am asking, so that you can apply the correct internal terminology.

I appreciate your offer to reconsider the request.

Purpose:
I simply want to understand what data items at individual level, were shared with whom in the US and China in the past and whether directly, or indirectly, how much NHS England patient data was provided to, processed by or shared with organisations there or to be used there. And understand how they access it.

It may be that the DLES Applicant form dated 19/07/2013 sections 2.3 and 2.4 are the most relevant. "Please confirm the “Territory” in which you wish to utilise the data in the end use of products or services supplied by you." It may be that the applicant address showing country of application may enable you to see country sufficiently transparently.

As in my March 13th request, this is only for all applications for data shared directly or indirectly with US or China relevant recipients. Please narrow the request to ignore my reference to Headquarter locations if you do not have that on the applications.

As in my request NIC-256894-N1H4V I also want to understand how, and if this is done via more methods other than through a processed file sharing via the DLES, for example, direct access to cloud sharing, SUS, HES via HDIS or similar, or via a third party sharing. However, if this adds time to the request, please remove this part.

I don't want to change the core question of my FOI NIC-256894-N1H4V but if by giving it limitations, it will help reduce the time estimated, may I suggest you consider;
1. only since April 1st 2013, if the Partridge review covers my content request for dates before that.
2. Start with or exclude the named organisations below and then others for the time period since April 1st 2013 for as much of the period as time permits.
3. As in my original request, only for data items released at individual level.

Recipients may be for example, but not exclusive to:
i. Kaiser Permanente and/or the University of California, San Francisco (UCSF)
ii. US Dept Veterans Health Administration
iii. National Institutes of Health (NIH): NIH, the US medical research agency, including 27 Institutes
and Centers, the component of the U.S. Department of Health and Human Services
iv.Peking University Health Sciences Center
v. The University of Hong Kong

For clarity, this should include, as per the original NIC-256894-N1H4V request (paras 1 & 2):

i. Date of application or data release
ii. Applying Org name
iii. Refers to only US or China: Clarification today whether it is applying Org location and/or territory of use or both
iv. Data items released
v. Total number of patients' data per release
vi. Time Period: Only since April 1st 2013 if the Partridge audit will make the listed content references.

If time saving for you, rather than compiling a spreadsheet overview, I would be happy to simply receive copies of the relevant applications.

If discussing by telephone would be easier to reduce time and effort on email if anything is unclear, I am happy to call at your convenience.

I simply want to understand what data items at individual level, were shared with whom in the US and China in the past and whether directly, or indirectly, how much NHS England patient data was provided to, processed by or shared with organisations there or to be used there. If time permits, to understand how they access it would be helpful.

Thank you for your time and consideration.
Yours sincerely,

Jen Person

Enquiries CRM,

 

Ref: NIC-271089-Y5Z9Q

 

 

 

Dear Jen Persson,

 

I am writing to acknowledge that your request for information was received
by The Health and Social Care Information Centre  on 18/05/2014 and is
currently being considered. 

If The HSCIC is able to provide you with the information you have
requested, then under the Freedom of Information (FOI) Act you are
entitled to receive it promptly and in any event no later than the 20th
working day following the date of receipt. However, we may need to contact
you to clarify your request, if this is required we aim to do this
promptly but no later than 7 days after receiving your initial request for
information.

 

May I take this opportunity to explain the FOI Act in more detail. The Act
provides a 'General right of access to information held by public
authorities. However, it also defines a number of exemptions which may
prevent the release of some or all of the information you have requested.
Therefore, the HSCIC will assess your information request in light of any
relevant exemptions.

 

If exemptions do apply, then the HSCIC may decide not to release all, or
part, of the information you have requested. I shall inform you if this is
the case, and advise you of your rights of appeal.

 

If the information you request contains reference to a third party then
they may be consulted prior to a decision being taken as to whether to
release the information to you.

 

The response to your request will be sent to you by email, however if you
require your response in any other format, please contact me to discuss a
suitable format.

 

The HSCIC will not normally charge a fee to provide you with the
information you have requested, unless the cost of dealing with your
request is more than £450 as outlined in Section 12 of the FOI Act and
Section 3 of the The FOI and Data Protection (Appropriate Limit and Fees)
Regulations 2004. If it appears likely that your request will cost more,
then the HSCIC is able to refuse to supply the information.  As per our
obligations under Section 16 of the FOI Act, every effort will be made to
provide you with details of how you may be able to reframe your request in
order for us to complete the required work within the (£450 / 18 person
hours) cost limit.

 

If you have any queries or should you wish to make a compliant about the
manner in which your request is being processed then please do not
hesitate to contact me at the above address in the first instance. Any
complaints will be investigated in accordance with the HSCIC complaints
procedure.

 

Further information about your rights under the Freedom of Information
Act, is available from the Information Commissioner's Office, Wilmslow,
Cheshire and on the HSCIC's website.

 

Kind Regards,

Contact Centre Team
Health and Social Care Information Centre
Vantage House
40 Aire Street
Leeds
LS1 4HT

0845 300 6016
Email: [1][HSCIC request email]
[2]http://www.hscic.gov.uk

show quoted sections

Enquiries CRM,

3 Attachments

 

Ref: NIC-271089-Y5Z9Q

Dear Jen Persson,

 Many thanks for your recent Freedom of Information internal review
request.

We have now received a reply to this from our colleagues in the
Information Governance team.

Please see the attached files.

Hope this helps.

Kind Regards,

Contact Centre Team
Health and Social Care Information Centre
1 Trevelyan Square
Boar Lane
Leeds
LS1 6AE

0845 300 6016
Email: [1][HSCIC request email]
[2]http://www.hscic.gov.uk

show quoted sections

Dear Enquiries CRM,

Thank you for the response received.

Yours sincerely,

Jen Person

Looking for an EU Authority?

You can request documents directly from EU Institutions at our sister site AskTheEU.org . Find out more .

AskTheEU.org