Your Data Matters – Make Your Choice

General Practice Data for Planning and Research 

The data held in the GP medical records of patients is used to support your care. It is also used to underpin health and care planning and research in England, helping to develop new services, find better treatments and improve patient outcomes for everyone.

Data for research and planning purposes can be used by NHS organisations, local authorities, university and hospital researchers, medical colleges and pharmaceutical companies researching new treatments

The NHS is committed to keeping Patient information safe and always being clear about how it is used. In May 2018, the strict rules about how this data can and cannot be used were strengthened. You can now choose to opt out of sharing your confidential information for research and planning.

There are a number of benefits to sharing data but some people have reservations about how this data will be used.

What is Changing?

NHS Digital (the custodian of this information) is in the process of developing a new way to collect this data, called the General Practice Data for Planning and Research data collection. Once this project goes live, NHS Digital will automatically extract data from GP records to support health and care planning and research. Please note that you will be informed well in advance of this project going live before any data is collected & you will have the choice to opt out of the programme at any time. It is anticipated that the project will go live in 12 months time (Sep 2022).

NHS Digital will not collect patients’ names or addresses but some data including NHS Number, date of birth and full postcode will be pseudonymised. This means that de-identification software replaces this data with unique codes so that patients will not be identified directly in the data. NHS Digital will be able to use the software to identify patients where there is a valid legal reason to do so.

Data that will be shared includes, gender, ethnicity, sexual orientation, diagnoses, symptoms, results, medications, allergies, immunisations,  referrals and appointments –  as well as information about staff who have treated you.

Free text (such as conversations with doctors and nurses), images and correspondence), coded data over 10 years old and data that cannot be disclosed by law (such as IVF treatment and gender reassignment) will not be shared.

You can read more about this programme of data sharing by clicking here

An easy read version of this leaflet is available by clicking here

You can watch a BSL video about this by clicking here

What Do I Need to Do?

Patients can choose if they do not want their confidential patient information to be used for purposes beyond their individual care and treatment – for research and planning. Patients, or people acting for them by proxy, have control over setting or changing their own opt-out choice, and can change their mind at any time.

If you are happy for your data to be shared for research & planning you do not need to do anything. 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 are explained below.

Type 1 Opt Out

A type 1 opt-out prevents information that identifies individuals being shared outside of their GP practice, for secondary uses. This means that data from your NHS record will not be extracted by NHS Digital.

You can do this by completing our Type 1 Opt-Out form online. You can also call 0300 3035678 and ask NHS Digital to send you a copy of this form and return it to us by email at [email protected] or by post to The Rycote Practice, Thame Health Centre, East Street, Thame, OX9 3JZ

You are able to opt out at any time if you do not want your data to be shared with NHS Digital by completing the opt-out forms aforementioned.

National Opt Out – previously called the Type 2 Opt Out

A type 2 opt-out prevents confidential patient information from being shared outside of NHS Digital for purposes beyond individual care. This means that it cannot be shared with other organisations (such as local authority, educational establishments and pharmaceutical companies) for research and planning purposes.

Please note that the National Opt Out cannot be done by your GP practice. It must be done by you or your advocate.

You can record your choice in the following ways

  • Online by clicking here (Please note you can only opt out online if you are over the age of 13).
  • Printing a form that can be found by clicking here and posting it to:

National Data Opt Out
Contact Centre
NHS Digital
HM Government
7 and 8 Wellington Place
Leeds
LS1 4AP

Please note that this form can be completed for yourself or on behalf of one of your children. Children over the age of 13 are able to complete this form for themselves. If you wish to opt out on behalf of another adult you are required to complete a different form which can be found by clicking here.

  • You can also email these forms to [email protected]
  • Finally you can make or change a choice for yourself by phoning the NHS Digital Contact Centre. The phone number is 0300 303 5678 – Monday to Friday, 9am to 5pm (excluding bank holidays).

There is no deadline for the National Data Opt-out but the sooner you do it, the sooner it takes effect. When a patient sets an opt-out choice, it is recorded against their NHS number on the Spine. It will remain unless the patient changes their mind, even after they have died. However you can withdraw your objection at any time, meaning that your data will be shared at the next data extraction.

If you completed a Type 2 opt out prior to 11th October 2018 as part of the Care.data programme it will automatically be converted to a national opt out. You can check your current opt-out status by clicking here

You can read more about opting out at: Understanding the national data opt-out – NHS Digital

You can also read: NHS Digital transparency Notice.