Information on type 2 opt-outs
Anyone wishing to apply for data should be aware that from 29 April 2016 NHS Digital removes certain patient records from data provided where a patient has requested an opt-out.
As part of the data application process, confirmation will be provided as to whether the data provided will have opt-outs removed. The consideration of whether opt-outs are removed is based on understanding the data being requested and the legal basis under which those data are released.
Further information follows regarding opt-outs, when they do not apply and how to understand what that might mean for data you receive.
What is the patient opt-out?
The NHS Constitution states "You have the right to request that your confidential information is not used beyond your own care and treatment and to have your objections considered".
To support those NHS constitutional rights, patients within England are able to opt out of their personal confidential information being shared by NHS Digital for purposes other than their own direct care, this is known as the 'Type 2 opt-out'. Patients are only able to register the opt-out at their GP practice.
NHS Digital is committed to supporting a patient's wishes in respect of sharing confidential information and has the necessary instruction, through a direction issued by the Secretary of State, and technical solutions in place to ensure that these patient opt-outs are upheld.
Further information about patient opt-outs is available here
When will type 2 opt-outs not apply to data provided?
Type 2 opt-outs will be applied to any personal confidential health and social care data released by the HSCIC unless one of the following criteria applies:
- It is used to support the patient's direct care and treatment.
- The patient has consented to the use of their information (whether before or after registering their type 2 opt-out) for a specific purpose such as a research study.
- A mandatory legal requirement (such as a court order) exists.
- The information released is not considered to be personal confidential information such as patient demographics information only, unless the legal basis given for release of the information is section 251 of the NHS Act 2006.
- The information is made available in anonymised form. 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. Pseudonymised data requests that go through the DARS process so that a Data Sharing Framework Contract and Data Sharing Agreement are in place are considered to be compliant with the ICO code of practice, and
- The legal basis under which the information is released is Regulation 3 of the Health Service (Control of Patient Information) Regulations 2002 to support the management of communicable diseases and other risks to public health.
Type 2 opt-outs will be upheld in data which are approved under section 251 of the NHS Act 2006 unless the Health Research Authority Confidentiality Advisory Group specifically advises otherwise, as upholding objections is a standard condition of section 251 approvals.
Type 2 opt-outs apply to a patient's personal confidential information which is subject to the common law duty of confidentiality, this means that the opt-out will continue to be upheld following the patient's death.
How type 2 opt-outs are applied?
Records for patients who have registered a type 2 opt-out will be identified using the NHS Number only.
Where a type 2 opt-out is applied the full record associated with the NHS number including the NHS number itself will be removed prior to the data being released.
Customers must not attempt to identify individuals who have raised a type 2 opt-out under any circumstances whether by comparing different data releases or by any other means.
Understanding the likely impact of type 2 patient opt-outs
Information is available to help customers understand the possible impact of type 2 opt-outs on the data they receive.
1. Number of records/number of patients removed
Customers receiving data where type 2 opt-outs are upheld will at the same time receive information to tell them the number of records and the number of individual patients that have been removed.
2. Type 2 opt-out statistics
The number and rate of opt-outs are included within the 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 HSCIC publications calendar.
3. Type 2 opt-out analysis
To help customers understand the effects of type 2 opt-outs, we have produced some comparisons using Hospital Episode Statistcs [67kb]. The comparisons show aggregate totals for HES episodes before and after patient opt-outs have been applied, including totals by age bands, gender, broad ethnicity groups and also procedure and diagnosis groups (inpatients only). They are provided for each of the HES inpatient, outpatient and A&E 2014-15 data sets.
Further information and support
For further information and support relating to type 2 opt-outs please contact us at email@example.com referencing 'Type 2 opt-outs - Data requests' in the subject line.
Alternatively, call us on (0300) 303 5678.