NHS Health Data Records Opt-Out

Posted on 2nd June, 2021

 

England’s NHS plans to share patient records with third parties - 55m patients have until June 23 to opt out of having their health data scraped into a new database

 

Financial Times Article - 26MAY21 (PDF)

 

"Your health records contain a type of data called confidential patient information. This data can be used to help with research and planning. 

"All health and care organisations in England are required to apply your national data opt-out in line with the policy by March 2020, including hospitals and GP practices. Your [previous] type 2 opt-out only applied to confidential patient information being shared by NHS Digital. 

 

National data opt-outs are not recorded at the GP practice and instead you can change your national data opt-out using the online service or by calling our contact centre." (PDF)

OPTING OUT (PDF)

 

"If you don’t want your identifiable patient data to be shared for purposes except for your own care, you can opt-out by registering a Type 1 Opt-out or a National Data Opt-out, or both. These opt-outs are different and they are explained in more detail below. Your individual care will not be affected if you opt-out using either option.

"Type 1 Opt-out (opting out of NHS Digital collecting your data).

We will not collect data from GP practices about patients who have registered a Type 1 Opt-out with their practice. More information about Type 1 Opt-outs is in our GP Data for Planning and Research Transparency Notice, (PDF) including a form that you can complete and send to your GP practice.

 

This collection will start on 1 July 2021 so if you do not want your data to be shared with NHS Digital please register your Type 1 Opt-out with your GP practice by 23 June 2021.

[UPDATED To provide more time to speak with patients, doctors, health charities and others, the collection of GP data for Planning and Research in England has been deferred from 1 July to 1 September 2021 (PDF)]

 

If you register a Type 1 Opt-out after this collection has started, no more of your data will be shared with us. We will however still hold the patient data which was shared with us before you registered the Type 1 Opt-out.

 

If you do not want NHS Digital to share your identifiable patient data with anyone else for purposes beyond your own care, then you can also register a National Data Opt-out.

 

TYPE 1 OPT-OUT FORM TO SEND TO GP HERE

 

"National Data Opt-out (opting out of NHS Digital sharing your data)

We will collect data from GP medical records about patients who have registered a National Data Opt-out. The National Data Opt-out applies to identifiable patient data about your health, which is called confidential patient information.

 

NHS Digital won’t share any confidential patient information about you - this includes GP data, or other data we hold, such as hospital data - with other organisations, unless there is an exemption to this. "

 

National data opt-out (PDF)

"You can make or change a choice for yourself by phoning the NHS Digital Contact Centre.

Young adults from the age of 13 can set and change their own national data opt-out . Make or change a choice for yourself or a child under the age of 13

 

The phone number is 0300 303 5678 – Monday to Friday, 9am to 5pm (excluding bank holidays)" (PDF)

"If I register an opt-out will it stop all of my information being shared by NHS Digital?

"Currently national data opt-outs will be considered on a case by case basis but may not apply during the emergency period due to the public interest and legal requirements in sharing certain data. For example, in the case of the Shielded Patients List, the opt-out was not applied due to the public interest in those patients receiving advice and support - we thought it was important that at-risk patients are protected." (PDF)

"Coronavirus update 

To help the NHS respond to coronavirus, your information may be used for coronavirus research purposes even if you have chosen not to share it. Any information used will be shared appropriately and lawfully. (PDF)

Collecting GP data - advice for the public - NHS Digital 

"We would only ever re-identify the data if there was a lawful reason to do so and it would need to be compliant with data protection law. For example, a patient may have agreed to take part in a research project or clinical trial and has already provided consent to their data being shared with the researchers for this purpose.

 

The law allows research projects which need to find volunteers for their research to contact patients directly about taking part in research or a clinical trial if the Health Research Authority has approved the request." (PDF)

"NHS Digital does not sell data. It does however charge those who want to access its data for the costs of making the data available to them. This is because we are not funded centrally to do this.

"The data will only be used for health and care planning and research purposes by organisations who have a legal basis and legitimate need to use the data. We publish the details of the data we share on our data release register so we can be held to account." (PDF)

 

See NHS Digital Data Dashboards (PDF)

NB: ** The dashboard will be switched off in early July.

Register of approved data releases (PDF)

"We have completed a data protection impact assessment

This is currently going through a final review and assurance process and we will publish the baseline version of it shortly. However, a DPIA is not a static assessment and, therefore, will be reviewed and updated regularly to reflect changes and developments in the service. We will publish updated versions of it from time to time. (PDF)

"We will collect: (PDF)

"We will not collect: 

  • your name and address (except for your postcode in unique coded form)
  • written notes (free text), such as the details of conversations with doctors and nurses
  • images, letters and documents
  • coded data that is not needed due to its age – for example medication, referral and appointment data that is over 10 years old coded data that GPs are not permitted to share by law – for example certain codes about IVF treatment, and certain information about gender re-assignment (PDF)

"When your choice does not apply

  • When required by law
  • When you have given consent e.g. medical research study
  • When there is an overriding public interest When information that can identify you is removed
  • When there is a specific exclusion (PDF)

"How confidential patient information is used

NHS state that, "There is no deadline for patients or public to opt-out of sharing your data for planning and research" (PDF) 

"How national data opt-outs are applied 

  • "Records for patients who have registered a national data opt-out are identified using the NHS Number only.
  • Where a national data opt-out is applied the full record associated with the individual's 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 registered a national data opt-out under any circumstances whether by comparing different data releases or by any other means." (PDF)

"Understanding the likely impact of national data opt-outs (PDF)

  • Number of records/number of patients removed
  • National data opt-out statistics
  • National data opt-out analysis
  • Guidance for researchers

____

See also:

  • UK held in violation of European Convention of Human Rights (25MAY21)
    • a violation of Article 8 (right to respect for private and family life/communications) in respect of the bulk intercept regime; and 
    • a violation of Article 8 in respect of the regime for obtaining communications data from communication service providers; also
    • a violation of Article 10 (freedom of expression)
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