GPES/SUS/NHS IC Safe Haven Policy Questions

helen Wilkinson-Makey made this Rhyddid Gwybodaeth request to Department of Health and Social Care

This request has been closed to new correspondence. Contact us if you think it should be reopened.

Roedd y cais yn llwyddiannus.

helen Wilkinson-Makey

Dear Department of Health,

I note all hospital records are submitted to the SUS Secondary User Service database and will now be sent to NHS IC Safe Haven for deidentification/linkage and sold to help life scences, pharmaceutical companies. http://www.ic.nhs.uk/data-extracts

I also note that SUS database uses identifiable patient data namely date of birth, postcode, GP details, hospital details.

My question is around Private Patients using NHS Hospitals as I understand it all Private Patient hospital records are also submiited to the SUS and hence the new NHS IC Safe Haven.

There is NO opt out to SUS I have been told by the DH and Bucks PCT unless a NHS patient agrees to SUS they cannot have hospital care.

1. Is it also the case that Private Patients cannot use NHS Hospitals unless they agree to their details being submitted to SUS/NHS IC?

2. If Private Patients can opt out what is technical mechanism used to facility the opt out?

3. What is the precise leglisation the DH relies upon that allows the use Private Patient hospitals records to be sent to be sent to SUS/NHS IC?

4. If Private Patients are allowed to opt out of their records being used why are NHS patients treated differently?

5. If patients have moral objections to their data anonymous or otherwise being used for say animal research, abortion what mechanisms does the DH have to allow patients opt out? Given that good practice guidelines published by the GMC state doctors must respect patients personal beliefs.http://www.gmc-uk.org/guidance/ethical_g...

What is the terchnical mechanism for such opt outs?

Will the DH be indemnifying doctors if they are unable to respect a patients beliefs due to records being sent to SUS/GPES/NHSIC that sold to life science/pharmaceutical companies for possible uses such as animal research and abortion?

6. With regards the small number of patients being seen as a Private Patient by an NHS GP are their Private GP records sent via GPES to NHS IC? If they are not sent why is there the discrepanices that their GP records are not used but their Private Patient hospital records are used and sent to SUS and NHS IC?

7. Will the NHS IC be doing any data linkage with a patients NHS hospital SUS and the same patients Private Patient hospital records? If so under what leglislation is linkage and collection of Private Patients allowed?

8. Finally I note that most GP Surgery's are requiring formal ID to register a patient. Given that this no opt out if you morally object to your data being sold or want to protect your confidentially can you tell me the exact leglislation which states proof of ID is required to register with a GP Surgery? As I understand you can use any name you wish so long as you are you doing anything fraudlent? I also note STD Clinics allow patients to use another name so why does nt the rest of the NHS?

As per Section 4a of Part 1 of the FOI Act
(

[1]http://www.opsi.gov.uk/acts/acts2000/ukp...
) 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 -
that is by then end of the working day of 31st August 2010.

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
(

[2]http://www.opsi.gov.uk/acts/acts2000/ukp...
). 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 wish to receive the information by email; I believe such a
request would be reasonable in these circumstances. As per Section
11 of Part 1 of the FOI Act (

[3]http://www.opsi.gov.uk/acts/acts2000/ukp...
) 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
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The "return address" (to which the information that I have
requested be should be sent ) is the email address that this
particular request originates from.

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").

Yours faithfully,

Helen Wilkinson-Makey

Department of Health and Social Care

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