How sharing patient data with NHS Digital helps the NHS and you

The NHS needs data about the patients it treats to plan and deliver its services and to ensure that the care and treatment provided is safe and effective. The General Practice Data for Planning and Research data collection will help the NHS to improve health and care services for everyone by collecting patient data that can be used to do this. For example, patient data can help the NHS to:

• monitor the long-term safety and effectiveness of care
• plan how to deliver better health and care services
• prevent the spread of infectious diseases
• identify new treatments and medicines through health research

GP practices already share patient data for these purposes, but this new data collection will be more efficient and effective.

We have agreed to share the patient data we look after in our practice with NHS Digital who will securely store, analyse, publish and share this patient data to improve health and care services for everyone. This includes:

• informing and developing health and social care policy
• planning and commissioning health and care services
• taking steps to protect public health (including managing and monitoring the coronavirus pandemic)
• in exceptional circumstances, providing you with individual care 
• enabling healthcare and scientific research

This means that we can get on with looking after our patients and NHS Digital can provide controlled access to patient data to the NHS and other organisations who need to use it to improve health and care for everyone.

Contributing to research projects will benefit us all as better and safer treatments are introduced more quickly and effectively without compromising your privacy and confidentiality.

NHS Digital has engaged with the British Medical Association (BMA), Royal College of GPs (RCGP) and the National Data Guardian (NDG) to ensure relevant safeguards are in place for patients and GP practices.

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What data is shared about you with NHS Digital

This data will be shared from 1st September 2021. Data may be shared from the GP medical records about:

• any living patient registered at a GP practice in England when the collection started – this includes children and adults
• any patient who died after this data sharing started, and was previously registered at a GP practice in England when the data collection started

We will not share your name or where you live. Any other data that could directly identify you, for example your NHS number, General Practice Local Patient Number, full postcode and date of birth, is replaced with unique codes which are produced by de-identification software before the data is shared with NHS Digital.

The data we share

We will share structured and coded data from GP medical records that are needed for specific health and social care purposes explained above.
Data that directly identifies you as an individual patient, including your NHS number, General Practice Local Patient Number, full postcode, date of birth and if relevant the date of death, is replaced with unique codes produced by de-identification software before it is sent to NHS Digital. This means that no one will be able to directly identify you in the data.

NHS Digital will be able to use the software to convert the unique codes back to data that could directly identify you in certain circumstances, and where there is a valid legal reason. It will still be held securely and protected, including when it is shared by NHS Digital.

We will share:

• data on sex, ethnicity and sexual orientation
• clinical codes and data about diagnoses, symptoms, observations, test results, medications, allergies, immunisations, referrals, recalls and appointments, including information about your physical, mental and sexual health
• data about staff who have treated you

More detailed information about the patient data we collect is contained in the Data Provision Notice issued to GP practices.

What is not shared:

• your name and address (except 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 we are not permitted to share by law – for example certain codes about IVF treatment, and certain information about gender reassignment

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Opting out

If you don’t want your identifiable patient data (personally identifiable data in the diagram above) 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)

If you do not want your identifiable patient data (personally identifiable data in the diagram above) to be shared outside of the GP practice for purposes except your care, you can register an opt-out with the GP practice. This is known as a Type 1 Opt-out.

Type 1 Opt-outs were introduced in 2013 for data sharing from GP practices, but may be discontinued in the future as a new opt-out has since been introduced to cover the broader health and care system, called the National Data Opt-out. If this happens, patients who have registered a Type 1 Opt-out will be informed. There is more information about National Data Opt-outs below.

NHS Digital will not collect any patient data for patients who have already registered a Type 1 Opt-in in line with current policy. If this changes patients who have registered a Type 1 Opt-out will be informed.

If you do not want your patient data shared with NHS Digital for the purposes above, you can register a Type 1 Opt-out with your GP practice. You can register a Type 1 Opt-out at any time. You can also change your mind at any time and withdraw a Type 1 Opt-out.

Data sharing with NHS Digital will start on 1 September 2021.

If you have already registered a Type 1 Opt-out with your GP practice your data will not be shared with NHS Digital.

If you wish to register a Type 1 Opt-out with your GP practice before data sharing starts with NHS Digital, this should be done by returning this form to your GP practice by 1st September 2021. If you have previously registered a Type 1 Opt-out and you would like to withdraw this, you can also use the form to do this. You can send the form by post or email to your GP practice or call 0300 3035678 for a form to be sent out to you.

If you register a Type 1 Opt-out after your patient data has already been shared with NHS Digital, no more of your data will be shared with NHS Digital. NHS Digital will however still hold the patient data which was shared with them before you registered the Type 1 Opt-out. 

If you do not want NHS Digital to share your identifiable patient data (personally identifiable data in the diagram above) with anyone else for purposes beyond your care, then you can also register a National Data Opt-out. There is more about National Data Opt-outs and when they apply below.

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

This applies to identifiable patient data about your health (personally identifiable data in the diagram above), which is called confidential patient information. If you don’t want your confidential patient information to be shared by NHS Digital with other organisations for purposes except your own care – either GP data, or other data it holds, such as hospital data – you can register a National Data Opt-out.

If you have registered a National Data Opt-out, NHS Digital won’t share any confidential patient information about you with other organisations, unless there is an exemption to this, such as where there is a legal requirement or where it is in the public interest to do so, such as helping to manage contagious diseases like coronavirus. You can find out more about exemptions on the NHS website.

From 1 October 2021, the National Data Opt-out will also apply to any confidential patient information shared by the GP practice with other organisations for purposes except your individual care. It won’t apply to this data being shared by GP practices with NHS Digital, as it is a legal requirement for us to share this data with NHS Digital and the National Data Opt-out does not apply where there is a legal requirement to share data.

You can find out more about and register a National Data Opt-out, or change your choice on nhs.uk/your-nhs-data-matters or by calling 0300 3035678.

More information on NHS Digital and this collection

You can read more about how NHS Digital uses the patient data we share with them in the NHS Digital General Practice Data for Planning and Research Transparency Notice.

You can also view The Chorley Surgery Fair Processing notice here

GDPR

The General Data Protection Regulation (GDPR) is a regulation in EU LAW on data protection and privacy for all individuals within the European Union and the European Economic Area. It also addresses the export of personal data outside the EU and EEA. The GDPR aims to give primary control to citizens and residents over their data and to simplify the regulatory environment for international business by unifying the regulation within the EU.

A processor of personal data must disclose what data is being collected and how, why it is being processed, how long it is being retained, and if it is being shared with any third parties. Users have the right to request a portable copy of the data collected by a processor in a common format, and the right to have their data erased under certain circumstances. Public authorities, and businesses whose core activities centre around regular or systematic processing of personal data, are required to employ a data protection officer (DPO), who is responsible for managing compliance with the GDPR. Businesses must report any data breaches within 72 hours if they harm user privacy.

Fair Processing Notice

How the NHS and care services use your information

The Chorley Surgery is one of many organisations working in the health and care system to improve care for patients and the public.

Whenever you use a health or care service, such as attending Accident & Emergency or using Community Care services, important information about you is collected in a patient record for that service. Collecting this information helps to ensure you get the best possible care and treatment.

The information collected about you when you use these services can also be used and provided to other organisations for purposes beyond your individual care, for instance to help with:

improving the quality and standards of care provided

research into the development of new treatments

preventing illness and diseases

monitoring safety

planning services

This may only take place when there is a clear legal basis to use this information. All these uses help to provide better health and care for you, your family and future generations. Confidential patient information about your health and care is only used like this where allowed by law.

Most of the time, anonymised data is used for research and planning so that you cannot be identified in which case your confidential patient information isn’t needed.

You have a choice about whether you want your confidential patient information to be used in this way. If you are happy with this use of information you do not need to do anything. If you do choose to opt-out your confidential patient information will still be used to support your individual care.

To find out more or to register your choice to opt-out, please visit www.nhs.uk/your-nhs-data-matters. On this web page you will:

• See what is meant by confidential patient information
• Find examples of when confidential patient information is used for individual care and examples of when it is used for purposes beyond individual care
• Find out more about the benefits of sharing data
• Understand more about who uses the data
• Find out how your data is protected
• Be able to access the system to view, set or change your opt-out setting
• Find the contact telephone number if you want to know any more or to set/change your opt-out by phone
• See the situations where the opt-out will not apply

You can also find out more about how patient information is used at:

https://www.hra.nhs.uk/information-about-patients/ (which covers health and care research); and

https://understandingpatientdata.org.uk/what-you-need-know (which covers how and why patient information is used, the safeguards and how decisions are made)

You can change your mind about your choice at any time.
Data being used or shared for purposes beyond individual care does not include your data being shared with insurance companies or used for marketing purposes and data would only be used in this way with your specific agreement.

Health and care organisations have until 2020 to put systems and processes in place so they can be compliant with the national data opt-out and apply your choice to any confidential patient information they use or share for purposes beyond your individual care. Our organisation is compliant with the national data opt-out policy.

How do we maintain the confidentiality of your records?

We are committed to protecting your privacy and will only use information collected lawfully in accordance with:

• Data Protection Act 1998
• Human Rights Act 1998
• Common Law Duty of Confidentiality
• Health and Social Care Act 2012
• NHS Codes of Confidentiality and Information Security
• Information: To Share or Not to Share Review

Every member of staff who works for The Chorley Surgery or another NHS organisation has a legal obligation to keep information about you confidential.

We will only ever use or pass on information about you if others involved in your care have a genuine need for it. We will not disclose your information to any 3^rd party without your permission unless there are exceptional circumstances (i.e. life or death situations), where the law requires information to be passed on for example Child/Adult Protection and Serious Criminal Activity.

Who are our partner organisations?

We may also have to share your information, subject to strict agreements on how it will be used, with the following organisations or receive information from the following organisations:-

• NHS Trusts / Foundation Trusts
• GP’s
• NHS Commissioning Support Units
• Independent Contractors such as dentists, opticians, pharmacists
• Private Sector Providers
• Voluntary Sector Providers
• Ambulance Trusts
• Clinical Commissioning Groups
• Social Care Services
• NHS Digital
• Local Authorities
• Education Services
• Fire and Rescue Services
• Police & Judicial Service
• Medi2data
• Other ‘data processors’ which you will be informed of

You will be informed who your data will be shared with and in some cases asked for explicit consent for this to happen when this is required.

We may also use external companies to process personal information, such as for archiving purposes.  These companies are bound by contractual agreements to ensure information is kept confidential and secure.

Access to personal information

You have a right under the General Data Protection Regulations to request access to view or to obtain copies of what information the surgery holds about you and to have it amended should it be inaccurate. To request this, you need to do the following:

• Your request must be made in writing to the GP – for information from the hospital you should write directly to them
• Under the legislation, no fee will be charged for your request, unless the request is manifestly unfounded or excessive, particularly if it is repetitive. Before any further action is taken, we will contact the patient with details of our “reasonable administrative charges” to comply with your request
• We are required to respond to you within 28 days
• You will need to give adequate information (for example full name, address, date of birth, NHS number and details of your request) so that your identity can be verified and your records located

Objections / Complaints

Should you have any concerns about how your information is managed at your GP practice, please contact the Business Manager.  If you are still unhappy following a review by the GP practice, you can then complain to the Information Commissioners Office (ICO) via their website (www.ico.org.uk).

Change of Details 

It is important that you inform the surgery immediately if any of your details such as your name or address have changed or if any of your details such as date of birth is incorrect in order for this to be amended.  You have a responsibility to inform us of any changes so our records are accurate and up to date for you.

Notification

The Data Protection Act 1998 requires organisations to register a notification with the Information Commissioner to describe the purposes for which they process personal and sensitive information.

This information is publicly available on the Information Commissioners Office website www.ico.org.uk

The practice is registered with the Information Commissioners Office (ICO).

Who is the Data Controller?

As your registered GP practice, we are the data controller for any personal data that we hold about you.

Data Protection Officer (DPO)

The Data Protection Officer (DPO) ensures, in an independent manner, that The Chorley Surgery applies the laws protecting patient’s personal data.    Hayley Gidman ([email protected]), is the named DPO for all GP practices across Lancashire.