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Applying Type 2 Opt Outs

Once NHS Digital  has processed the opt-out your personal confidential information will no longer appear in data disseminations leaving NHS Digital that are in scope to have opt-outs applied.

Conditions

Type 2 opt-outs do not apply in the following circumstances:

  • Where your information is made available for the purposes of enabling your direct care including the operation of national screening programmes such as NHS Bowel Cancer Screening.
  • You have given consent for your information to be used in a specific data release, for example where you have agreed to participate in a medical research study or clinical trial.

(If you have previously given consent to the use of your health data for a specific purpose such as a research study and you no longer wish for your data to be used in this way you will need to contact the organisation that you gave consent to).

  • The information released is not personal confidential information (as defined in the NHS Act 2006, Section 251, para's 10 and 11) this means both information that identifies who you are and includes some information about your physical or mental health condition, care or treatment.
  • The information is made available in anonymised form (so that individuals are not identified in the data). For example the data are either aggregate such as counts of information or it complies with the ICO's Anonymisation: managing data protection risk code of practice.
  • Where there is a legal requirement to provide information for example disclosure is required by an order of court.
  • Where there is an overriding public interest in the disclosure.

There are also a small number of special circumstances where Secretary of State for Health has decided the information flow is so important that type 2 opt-outs should not be applied where:

For more details about this service see http://www.ncr.nhs.uk/patientinfo/. If you do not want your information to be provided to the National Cancer Registration Service and if you have not already done so, you will need to opt out of this service, see http://www.ncr.nhs.uk/removal-request/

  • Information is provided to the National Congenital Anomalies and Rare Diseases Registration Service.

If you do not want your information to be provided to the National Congenital Anomalies and Rare Diseases Registration Service and if you have not already done so, you will need to opt out of this service. For more details about this service and how to opt out see https://www.gov.uk/guidance/the-national-congenital-anomaly-and-rare-disease-registration-service-ncardrs.

  • The information is provided for the Assuring Transformation collection of data about people with learning disabilities and/or autism who are in hospital for mental and/or behavioural healthcare reasons.

If you do not want your information to be provided for the Assuring Transformation data collection and if you have not already done so, you will need to opt out of this collection. For more details about this data collection and how to opt out see https://www.england.nhs.uk/learningdisabilities/atd/

Opt-outs which are made prior to a person's death will continue to be respected.

Exclusions

There are some limited circumstances where it is not possible for NHS Digital to apply type 2 opt outs:

  • Where the personal confidential information held by NHS Digital does not contain an NHS number and means that we are unable to match your opt-out to this other information we may hold about you.
  • In the Cancer Waiting Times system. Because of the complexity of individual patient treatment plans and the age of the current system, it is not currently possible to adapt the existing system to process patient opt-outs. The system is due to be replaced, with a new system coming online in 2017.
  • To a small number of IT systems provided by NHS Digital that are mainly used to support your direct care where the information is also used in part by health care organisations to administer the health service and it is too complex to separate out these purposes in order to apply type 2 opt-outs. For example, information which is used to manage payment for your care, to trace your electronic patient record, or to audit who has accessed your record, where it could be considered these purposes may not be seen as direct care?

Collecting type 2 opt-out data

We collect the following information about type 2 opt-outs from GP practices in England every month:

  • the opt-out / withdrawal of opt-out code
  • the date the opt-was recorded in the patient record
  • the NHS number associated with the code
  • the GP's practice unique code, and
  • for monitoring purposes, NHS Digital also counts the number of patients registered at each general practice who have currently recorded a type 1 opt-out. No additional information is collected where you have recorded a type 1 opt-out.

A privacy impact assessment has been carried out in relation to this data collection, the details of which can be found pdf icon here [304kb].

How type 2 opt-out requests are processed

Once the opt-out information has been collected from the GP systems it is processed by an automated IT system to produce:

  • a historic record of all information received, and
  • an updated record of current opt-outs to be applied.

The historic record of opt-out information enables us to check any queries about the date an opt-out was received by us and then if subsequent withdrawal of that opt-out was received so that we know during what period we will have applied an individual's opt-out.

The record of current opt-outs is used as part of an IT system that applies type 2 patient opt-outs to data before it is provided to those organisations, outside of NHS Digital, that have been approved to receive those data for the purpose of improving health and social care.

The IT system automatically matches data that has been prepared to be released against the NHS numbers held in the record of current opt-outs. Where a match is confirmed all data relating to that NHS number, including the NHS number itself, are removed before the data are released. In this way we can stop personal confidential information about you being disseminated when you have opted out.

As the matching is based on the NHS number, you are advised to check that your type 2 opt-out is still recorded in the event that you are assigned a different NHS number.

How long it takes to apply opt-outs

Once the opt-out information is received by NHS Digital, it can take up to 21 days before it can be applied to future data releases leaving NHS Digital.

Useful links and information

The number and rate of opt-outs are included within the regular Care Information Choices statistical publication.  This includes a breakdown of statistics at both Clinical Commissioning Group and individual GP Practice level. Future publications are listed on the NHS Digital publications calendar.

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