NHS Digital – Clarification On Data Usage


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    Dear all,

    The following information was received from Dave Cronin on 15 November 2018 and represents the NHS Digital position as at that date.  (Please note that we cannot guarantee this position.  It may be subject to future change by NHS Digital.)  The questions (in blue) were submitted by a delegate at the Participant Data Sharing Workshop on 1 November 2018.

    • If as a CTU we receive data from NHS-digital then we cannot keep it beyond data usage period, at patient level whether derived or anonymised.
      Is this correct?

    Firstly, ‘the data’ is the data supplied by NHS Digital and this includes manipulated data.  Derived data is not ‘the data’ and its retention or use is not subject to a Data Sharing Agreement and not controller nor constrained by NHS Digital.  However, the definition of derived data (in NHS Digital’s Data Sharing Framework Contract) is:

    any Data (wholly or in part) that is Manipulated to such a degree that it:

    (a) cannot be identified as originating or deriving from the Data and cannot be reverse-engineered such that it can be so identified; and

    (b) is not capable of use as a substitute for the Data; and

    (c) has not at any time been verified by NHS Digital as not fulfilling the criteria (a) and (b) above

    Based on this definition, it is probable that patient level data would be ‘manipulated’ rather than ‘derived’.  Manipulated data is defined as:

    any Data that has been Manipulated, unless and until it qualifies as Derived Data (to be determined at the sole discretion of NHS Digital);

    ‘Manipulate’ means:

    • combine (wholly or in part) with other data or information; or

    • aggregate (wholly or in part) with other data or information; or

    • adapt (wholly or in part); (and “Manipulating” and “Manipulated” shall be construed accordingly)

    As far as ‘the data’ is concerned, it cannot be kept beyond the point where there is an active Data Sharing Agreement in place between the data controller (in this case, the CTU) and NHS Digital.  That Agreement would specify the purposes for which the data can be used including where it can be processed in what format in what manner for what reasons and by whom (at organisational level).  The Agreement is for a fixed term which is likely to be shorter than the CTU’s intended data usage period but the Agreement can be extended on request prior to expiry or amended, subject to application, should the purpose(s) for processing change beyond those covered in the Agreement.

    • If NHS-digital provided us with date of death for patients from their NHS number, then when the data usage period is over we can only keep a count of how many have died and not whom had died.  Is this correct?On expiry or termination of the Data Sharing Agreement then the data would need to be destroyed.  If date of death was supplied, then typically it would need to be destroyed.  There are scenarios where this would not be the case but this would depend on the specifics of the case such as whether the data was verified by another source.
    • No data linking can be done/kept after the data usage period. i.e. we cannot still link a death back to a known individual
      Is this correct?I’m not sure how ‘the data usage period’ is being defined.  Linking the data is data usage so there would be no need to do this after the data usage period.  Retention/storage is a type of data processing and an Agreement would need to be in place for as long as the data is retained.
    • If we derive patient level data from NHS-digital data (i.e. simplify it or further anonymise it) can we keep it beyond the data usage period.  e.g. 1 date of death becomes age at death, e.g. 2 date of birth becomes an age. Is this permitted?I think this is covered in my response above (definitions of ‘derived’ data).  Replacing date of death with age at death would be classed as ‘use as a substitute for the Data’.  I would expect that retaining the fact of death would be a sufficient derivation.

    Overall, the key message is that organisations can keep data for as long as they need as long as they maintain and comply with an active Data Sharing Agreement.


    If you have any other questions for NHS Digital on this or other topics please post them here and we will add the responses below.




    Louise Williams
    UKCRC Registered CTU Network
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