Deletion of confidential medical information uploaded to care.data

The request was successful.

Dear Health and Social Care Information Centre,

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 9th September 2013.

I am familiar with the process by which patients can prevent their confidential and identifiable medical information from being regularly uploaded to care.data, or subsequently used in an anonymised way, by means of the relevant read codes.

I would like to know how patients, whose personal medical information has been uploaded to care.data, may ensure that their uploaded data is completely deleted from your databases, should they change their mind and be unhappy about this project, or (more likely) discover that their information has been uploaded without their explicit consent. In other words, whether patients can place themselves and their GP data in the same situation that it would have been had they prohibited uploads before any such data was extracted (had they known what was going to happen).

Given that uploaded data is not being (and will not be) used to provide direct clinical care, i.e. these are "secondary uses" of the uploaded data, please could you kindly inform me:

• Can patients request that their uploaded data be completely and permanently removed from care.data servers?

• If not, on what grounds does the HSCIC rely on to refuse such a request?

• If not, please could you describe the process by which patients may appeal such a refusal, and who to apply to for such an appeal.

• If patients can get their data deleted, please could you describe the process (the forms, and who to apply to) that patients must follow to ensure complete removal. Please could you supply the application form for this process, or a link to it, and details of where to send such a form to.

As per Section 1(4) of the FOI Act
( http://www.legislation.gov.uk/ukpga/2000... ) I would like the information in question held at the time when my request is received (draft or otherwise), except that account may be taken of any amendment or deletion made between now and the latest time by which the information is to be communicated to me, being an amendment or deletion that would have been made regardless of the receipt of my request.

I would be grateful if you would be kind enough to 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.

I wish to receive the information by email; I believe such a request would be reasonable in these circumstances. As per Section 11 of the FOI Act ( http://www.legislation.gov.uk/ukpga/2000... ) I would be grateful if you would "so far as reasonably practicable give effect to that preference"; if you determine that it is not reasonably practicable to comply with this preference then you are required by law to notify me of the reasons for your determination. As per the Act, I have provided you with a valid return address, namely the unique email address that this request originates from.

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
( http://www.legislation.gov.uk/ukpga/2000... ). 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.

I would be grateful if you would kindly acknowledge receipt of this request as recommended by the ICO (“It would be good practice to acknowledge receipt of requests and to refer to the 20 working day time limit, so that applicants know their request is being dealt with”).

Thank you once again.

Yours sincerely,

Dr Neil Bhatia

Enquiries CRM,

 

Ref: NIC-218689-H1R0N

 

 

 

Dear Dr Neil Bhatia,

 

I am writing to acknowledge that your request for information was received
by The Health and Social Care Information Centre on 09/09/2013 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

------------------- Original Message

show quoted sections

Please use this email address for all replies to this request:
[FOI #175980 email]

Is [HSCIC request email] the wrong address for Freedom of Information
requests to Health and Social Care Information Centre? If so, please
contact us using this form:
[6]https://www.whatdotheyknow.com/help/cont...

Disclaimer: This message and any reply that you make will be published on
the internet. Our privacy and copyright policies:
[7]https://www.whatdotheyknow.com/help/offi...

If you find this service useful as an FOI officer, please ask your web
manager to link to us from your organisation's FOI page.

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References

Visible links
1. mailto:[HSCIC request email]
2. http://www.hscic.gov.uk/
3. http://www.legislation.gov.uk/ukpga/2000...
4. http://www.legislation.gov.uk/ukpga/2000...
5. http://www.legislation.gov.uk/ukpga/2000...
6. https://www.whatdotheyknow.com/help/cont...
7. https://www.whatdotheyknow.com/help/offi...

Enquiries CRM,

Dear Neil Bhatia,

Further to your recent request "Freedom of Information request - Deletion
of confidential medical information uploaded to care.data" received on
09/09/2013 11:22.

Please be assured that we are working towards a resolution and hope to
respond as soon possible.

If you have any queries regarding this request, please contact us quoting
reference number NIC-218689-H1R0N

Kind Regards,

Contact Centre Team

Health and Social Care Information Centre (HSCIC)
Tel: 08453006016
Email: [1][HSCIC request email]
Web: [2]www.hscic.gov.uk

References

Visible links
1. mailto:[HSCIC request email]
2. http://www.hscic.gov.uk/

Enquiries CRM,

Dear Neil Bhatia,

Further to your recent request "Freedom of Information request - Deletion
of confidential medical information uploaded to care.data" received on
09/09/2013 11:22.

Please be assured that we are working towards a resolution and hope to
respond as soon possible.

If you have any queries regarding this request, please contact us quoting
reference number NIC-218689-H1R0N

Kind Regards,

Contact Centre Team

Health and Social Care Information Centre (HSCIC)
Tel: 08453006016
Email: [1][HSCIC request email]
Web: [2]www.hscic.gov.uk

References

Visible links
1. mailto:[HSCIC request email]
2. http://www.hscic.gov.uk/

Enquiries CRM,

Dear Neil Bhatia,

Further to your recent request "Freedom of Information request - Deletion
of confidential medical information uploaded to care.data" received on
09/09/2013 11:22.

Please be assured that we are working towards a resolution and hope to
respond as soon possible.

If you have any queries regarding this request, please contact us quoting
reference number NIC-218689-H1R0N

Kind Regards,

Contact Centre Team

Health and Social Care Information Centre (HSCIC)
Tel: 08453006016
Email: [1][HSCIC request email]
Web: [2]www.hscic.gov.uk

References

Visible links
1. mailto:[HSCIC request email]
2. http://www.hscic.gov.uk/

Dear HSCIC,

Just a polite reminder that you must respond to my (fairly straightforward) request for information by October 7th, that is a week tomorrow, else you will be in breach of section 17 of the Act.

Yours sincerely,

Dr Neil Bhatia

Enquiries CRM,

Dear Neil Bhatia,

Further to your recent request "Freedom of Information request - Deletion
of confidential medical information uploaded to care.data" received on
09/09/2013 11:22.

Please be assured that we are working towards a resolution and hope to
respond as soon possible.

If you have any queries regarding this request, please contact us quoting
reference number NIC-218689-H1R0N

Kind Regards,

Contact Centre Team

Health and Social Care Information Centre (HSCIC)
Tel: 08453006016
Email: [1][HSCIC request email]
Web: [2]www.hscic.gov.uk

References

Visible links
1. mailto:[HSCIC request email]
2. http://www.hscic.gov.uk/

Dear HSCIC,

Just a another polite reminder that you must respond to my (fairly straightforward) request for information promptly, but by October 7th at the latest, that is next Monday, else you will be in breach of section 17 of the Act.

Yours sincerely,

Dr Neil Bhatia

Dear HSCIC,

Just a another polite reminder that you must respond to my straightforward request for information promptly, but by October 7th at the latest, that is next Monday, else you will be in breach of section 17 of the Act.

Yours sincerely,

Dr Neil Bhatia

Enquiries CRM,

 

Ref: NIC-218689-H1R0N

 Dear Dr Bhatia,

Thank you for your correspondence regarding your Freedom of Information
(FOI) Request relating to the handling of patient objections in relation
to the GP Extraction Service (GPES) Care.Data extract.

We can confirm that our response will be with you by Monday the 7th
October 2013 at the latest.

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

------------------- Original Message

show quoted sections

Please use this email address for all replies to this request:
[FOI #175980 email]

Disclaimer: This message and any reply that you make will be published on
the internet. Our privacy and copyright policies:
[4]https://www.whatdotheyknow.com/help/offi...

If you find this service useful as an FOI officer, please ask your web
manager to link to us from your organisation's FOI page.

-------------------------------------------------------------------

References

Visible links
1. mailto:[HSCIC request email]
2. http://www.hscic.gov.uk/
3. http://www.hscic.gov.uk/
4. https://www.whatdotheyknow.com/help/offi...

Enquiries CRM,

1 Attachment

 

Ref: NIC-218689-H1R0N

Dear Dr Neil Bhatia,

Many thanks for your enquiry, you can now find our full response to this
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

------------------- Original Message

show quoted sections

Please use this email address for all replies to this request:
[6][FOI #175980 email]

Is [7][HSCIC request email] the wrong address for Freedom of Information
requests to Health and Social Care Information Centre? If so, please
contact us using this form:
[8]https://www.whatdotheyknow.com/help/cont...

Disclaimer: This message and any reply that you make will be published on
the internet. Our privacy and copyright policies:
[9]https://www.whatdotheyknow.com/help/offi...

If you find this service useful as an FOI officer, please ask your web
manager to link to us from your organisation's FOI page.

-------------------------------------------------------------------

References

Visible links
1. mailto:[HSCIC request email]
2. http://www.hscic.gov.uk/
3. http://www.legislation.gov.uk/ukpga/2000...
4. http://www.legislation.gov.uk/ukpga/2000...
5. http://www.legislation.gov.uk/ukpga/2000...
6. mailto:[FOI #175980 email]
7. mailto:[HSCIC request email]
8. https://www.whatdotheyknow.com/help/cont...
9. https://www.whatdotheyknow.com/help/offi...

Dr Neil Bhatia left an annotation ()

Information about care.data can be found on my website:

www.care-data.info

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