Data Provision Notice: Opt out of NHS Digital’s Mass Extraction
Patients will be given until 25 August to opt out of NHS Digital’s mass extraction of GP data, by contacting their GP practice.
Patients can opt out of NHS Digital’s GP data extraction by filling in a type-1 opt-out form and sending it to their GP practice via post or email by the deadline.
Patients can also register a less stringent opt-out, called a ‘national data opt-out’. This means NHS Digital can extract the information but not share it with any other organisations, except for the purpose of the patient’s own care.
Data Provision Notice to require the submission of general practice data in connection with the national Cardiovascular Disease Prevention Audit (CVDPREVENT Audit).
NHS England has directed NHS Digital to collect and analyse data in connection with Cardiovascular Disease Prevention Audit (referred hereafter to as “CVDPREVENT Audit”).
The NHS Long Term Plan identifies cardiovascular disease (CVD) as a clinical priority and the single biggest condition where lives can be saved by the NHS over the next 10 years. CVD causes a quarter of all deaths in the UK and is the largest cause of premature mortality in deprived areas.
The CVDPREVENT Audit is a new national primary care audit being commissioned by NHS England to support the implementation of the NHS Long Term Plan, the annually negotiated General Medical Services contract and the national CVD Prevention programme.
For further information: https://digital.nhs.uk/about-nhs-digital/corporate-information-and-documents/directions-and-data-provision-notices/data-provision-notices-dpns/cardiovascular-disease-prevention-audit?_cldee=YXNobGV5LmRhdmllczVAbmhzLm5ldA==&recipientid=lead-dbbef85c270deb11a812000d3a86b23d-c6fa04ea3f87434084156922608f6553&esid=6e5380d6-c004-eb11-a813-000d3a86d6fd
(COVID-19) Pandemic and Your Information
The ICO recognises the unprecedented challenges the NHS and other health professionals are facing during the COVID-19 pandemic.
The ICO also recognise that ‘Public bodies may require additional collection and sharing of personal data to protect against serious threats to public health.’
The Government have also taken action in respect of this and on 20th March 2020 the Secretary of State for Health and Social Care issued a notice under Regulation 3(4) of the Health Service (Control of Patient Information) Regulations 2002 requiring organisations such as GP Practices to use your information to help GP Practices and other healthcare organisations to respond to and deal with the COVID-19 pandemic.
Please note that this notice has now been revised and extended by a further notice from 10 September 2021 until 31st March 2022
In order to look after your healthcare needs during this difficult time, we may urgently need to share your personal information, including medical records, with clinical and non clinical staff who belong to organisations that are permitted to use your information and need to use it to help deal with the COVID-19 pandemic. This could (amongst other measures) consist of either treating you or a member of your family and enable us and other healthcare organisations to monitor the disease, assess risk and manage the spread of the disease. Additionally, the use of your information is now required to support NHS Test and Trace.
Please be assured that we will only share information and health data that is necessary to meet yours and public healthcare needs. The Secretary of State for Health and Social Care has also stated that these measures are temporary and will expire on 31st March 2022 unless a further extension is required. Any further extension will be will be provided in writing and we will communicate the same to you.
Please also note that the data protection and electronic communication laws do not stop us from sending public health messages to you, either by phone, text or email as these messages are not direct marketing.
It may also be necessary, where the latest technology allows us to do so, to use your information and health data to facilitate digital consultations and diagnoses and we will always do this with your security in mind.
If you are concerned about how your information is being used, please contact our DPO using the contact details provided in this Privacy Notice.
Primary Care Network
We are a member of the Bradford Primary Care Network (PCN). This means we will be working closely with a number of other Practices and health care organisations to provide healthcare services to you.
During the course of our work we may share your information with these Practices and health organisations/professionals. We will only share information where it relates to your direct healthcare needs.
When we do this we will always ensure that appropriate agreements are in place to protect your information and keep it safe and secure. This is also what the Law requires us to do.
If you would like to see the information the PCN holds about you please contact the Data Protection Officer:
Data Protection Officer
Scorex House West
1 Bolton Road
01/06/2020 Approved by CCG’s eDSM group
- The information we hold about you
- Why do we [and other organisations] need access to your personal data?
- What do we mean by ‘Direct Care’?
- How we share your personal data [our practice default]
- Your choice
- Available audits
- Legal basis for holding and processing personal data
- Contact details for our data protection officer
- Data retention periods
- Data subject rights
- Further Information
This document is to explain to you the types of personal data we hold about you and how we may use this information for the benefit of your health and wellbeing. The document advises you on how we allow [or do not allow] your electronic health record to be made available to other organisations, across a variety of healthcare settings. This is subject to your permission, being made on the computer system SystmOne. It informs you of your options should you wish to take further control of your SystmOne record. The information should be carefully considered and any concerns you have about the data we hold, and how we use it, should be raised with us.
2.The information We Hold About You
As your registered GP practice we hold your electronic health record. This contains sensitive information about you, your health and your wellbeing. The following list provides an example of the type of information (both past and present) that can be held within your record:
- Demographic and contact details (name, date of birth, address, telephone number, email address, gender, sex, religion, marital status etc.)
- Appointments and consultations
- Diagnoses (including physical disabilities and mental health conditions)
- Medication, vaccinations, pathology results (e.g. blood tests) and allergies
- Hospital correspondence and correspondence from other health and social care settings (including x-rays, discharge letters and referrals)
- Relationships/next of kin
3.Why do We [and Other Organisations] Need Access to Your Personal Data?
This information means we can provide you with high quality direct care in a safe and effective manner. Being able to see your detailed record allows for an overall picture of your health and wellbeing to be assessed. This then helps us to diagnose and prescribe appropriate courses of treatment to you. This means that the most safe and efficient care is provided to you.
We do not want you to have to repeat your medical history and remember every detail, which may or may not be relevant, to every health professional involved in your care. Lack of access to your information may lead to misdiagnosis, inappropriate prescribing of medication or tests and/or ineffective treatment.
We recognise that you will benefit from other health providers that care for you (either currently or in the future) having access to your electronic health record. This is because they can then make fully informed decisions about the care you require. The reasons for access to the detailed record, mentioned above, apply across the health profession. A shared record ensures that care providers always have the most accurate, up to date information.
In a case where patient data is required for research purposes, we do not provide patient identifiable information. Any data we provide is anonymised or pseudonymised, unless you have given explicit consent.
Anonymised data, is data about you but from which you cannot be personally identified. Anonymised data is any personal data which has been processed so that all identifiers (such as name or NHS number) are removed, minimising the likelihood that the data will identify individuals.
Pseudonymised data is any personal data which has been processed so that all identifiers such as name, address, date of birth and NHS number is removed and replaced with a code which makes it anonymous to those who should not see your identifiable data, but would allow others such as those responsible for providing care to identify an individual.
Personal identifiable data, is data which relates to a living individual who:
- can be identified either from that data; or
- from that data in conjunction with other information within the possession of the data controller
4. National Data Opt Out
The information collected about you when you use a health or care service 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 https://www.nhs.uk/your-nhs-data-matters. On this web page you will:
- See what is meant by confidential patient information
- Find example 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 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.
5. Type 1 Opt Out
This practice is supporting vital health and care planning and research by sharing your data with NHS Digital. For more information about this see the GP Practice Privacy Notice for General Practice Data for Planning and Research.
6. What do We Mean by ‘Direct Care’?
The term ‘Direct Care’ means a clinical health activity concerned with the prevention and investigation and treatment of illness. It includes supporting your ability to function and improve your participation in life and society. It also includes the assurance of safe and high quality care and treatment undertaken by one or more registered and regulated health professionals and their team with whom you have a legitimate relationship for your care purposes.
It does not include access to information for purposes such as insurance, advertising or marketing.
7. How we Share Your Personal Data [Our Practice Default]
As your GP practice we have set the following practice settings for all our registered patients whose detailed electronic health record is in our possession and within the clinical computer system, SystmOne. However, we recognise that each of our patients have differing health care needs and you may wish to control yourself how your personal data is shared. This can be done via ‘Your Choice’ stated below.
A. Implied consent to make your record available to all organisations (without verification/security process) for direct care purposes
We assume that you are happy to share your detailed electronic health record to those that care for you. We therefore, make your record available to all NHS commissioned services using the clinical record computer system, SystmOne.
This allows for anyone at these organisations who have the appropriate controls to retrieve your electronic record once you are registered for care. However, these individuals should only legitimately access your record to provide you with care services. They must also record your permission to view your record.
B. Explicit consent to make your record available to all organisations (without verification/security code process) for direct care purposes
We will obtain your explicit consent (permission) to share your detailed electronic health record to those that care for you. By providing your permission, we make your record available to all NHS commissioned services using the clinical record computer system, SystmOne. This allows for anyone at these organisations who have the appropriate controls to retrieve your electronic record, once you are registered for care. However, these individuals should only legitimately access your record to provide you with care services. They must also record your permission to view your record.
Your individual sharing preference will overwrite our organisation’s default sharing setting.
Example of Services Who Might Need to View Your Record
The types of organisation who could be involved in your direct care and therefore need access to your electronic record are:
- All GP practices
- Referral triage and Out of Hours call centres (services determining which organisations should care for you)
- Child HealthUrgent Care (for example A&E, Minor Injury Units and Out of Hours services)
- Palliative Care
- Prisons and custody suites or offender health
- Substance misuse service
- All NHS hospitals – acute and community
- Bradford Teaching Hospitals Foundation Trust
- Bradford District Care Trust services
- NHS Mental Health Services
- Community pharmacies
The full list of organisations can be seen and updated in your patient online record.
To find out more about these types of organisations please go to the following webpage:
http://www.tpp-uk.com/products/systmone/modules or talk to a member of your GP practice.
If at any point in the future you are not happy to share your electronic record in this way, please let us know as soon as possible.
8. Your Choice
You may not agree with the health and social care organisations we have chosen to have access to your detailed electronic health record (the practice default). You can therefore control this yourself.Your choice will override our settings. You have the following options:
- No organisations require you to provide a security code (Allowed List) – You can give your permission to allow all NHS commissioned services and local authorities providing health services, using the clinical record computer system, SystmOne, to access your record.
- This allows for any individual at these organisations (who have the appropriate access controls) to retrieve your electronic record, only after you are registered with them for care. These individuals should only legitimately access your record to provide you with care services and they should always request and gain your consent before doing so.
- All organisations require you to provide a security code (Verification List) – You can require that all health organisations must ask you for a PIN number on your first visit to that service. This allows you to verify/confirm that each individual organisation should have access to your record, as they are legitimately involved in your care. You will require access to either a mobile phone or email account, as a PIN will be sent to you. Alternatively, you will need access to SystmOnline to accept or reject a share request sent to your account by the organisation wishing to view your record. Please contact your GP if you are not enabled for SystmOnline.
- Custom lists – You can put together your own custom lists for access, adding organisations to each of 3 lists i.e. does not require a security code (allowed list), requires a security code (verification list) and cannot access (prohibited list). The functionality for each list will act as described above, but it is you who can determine the level of access, which applies to them. This should be done in conjunction with your GP to ensure you understand the full implications of your decisions.
- Dissent/Refusal of your permission – You can refuse your permission for your record to become available to all NHS commissioned services and local authorities providing health services, using the clinical record computer system, SystmOne, which prevents us sharing your clinical record to any other organisation involved in your care. Please carefully consider the benefits of sharing your record before choosing this option.
- Marking items as private – If you have had a consultation about a particularly sensitive matter, you can ask for this section of your record to be marked as private. That way, even if you consent for another service to see your record, that consultation will not be shown outside the organisation that recorded it.
You can make changes to the above* at any time by contacting us or by logging onto your SystmOnline account. (*you cannot add an organisation to the prohibited list yourself, you must speak with your GP first if you wish to do this.)
9. Available Audits
Audits are useful for your understanding about the types of organisation and individual(s) who are viewing your record. They allow you to raise any concerns about potential illegitimate or unnecessary access of your personal data with the relevant person or organisation. The ability to audit record access is a significant benefit of electronic records over paper records as it allows for a visible trail to be available to you in the following ways:
Alerts – You can opt to receive an alert via SMS or email every time an individual at any health and social care organisation attempts to record your consent to view your record. This means that you can be confident that the appropriate people are viewing your record and you can raise concerns with any organisation where you feel this is not the case.
SystmOnline Record Audit – You can view which organisations have accessed your electronic health record within SystmOnline. Ability to access this audit in SystmOnline is controlled by your GP. Any concerns about access can be raised with the relevant organisation.
Record Sharing List – You can ask your GP practice to show you a list of all health and social care organisations currently caring for you and whether they have recorded your consent or dissent to view your record. If you disagree with the consent options recorded then you, or your GP, should contact those organisations and ask them to amend the setting.
10. Legal basis for holding and processing personal data
- Necessary for the purposes of preventative or occupational medicine, for assessing the working capacity of the employee, medical diagnosis, the provision of health or social care or treatment or management of health or social care systems and services on the basis of Union or Member state law or a contract with a health professional. (Article 9(2)h of GDPR)
- Processing is necessary for reasons of public interest in the area of public health, such as protecting against serious cross-border threats to health or ensuring high standards of quality and safety of health care and of medicinal products or medical devices, on the basis of Union or Member State law which provides for suitable and specific measures to safeguard the rights and freedoms of the data subject, in particular professional secrecy. (Article 9(2)i of GDPR)
11. Data retention periods
The Data Protection Act 1998 (DPA) requires that we retain personal data no longer than is necessary for the purpose we obtained it for. Ensuring personal data is disposed of when no longer needed will reduce the risk that it will become inaccurate, out of date or irrelevant. The Act does not set out any specific minimum or maximum periods for retaining personal data. Instead, it says that personal data processed for any purpose or purposes shall not be kept for longer than is necessary for that purpose or those purposes.
It means that we will need to:
- review the length of time we keep personal data
- consider the purpose or purposes we hold the information for in deciding whether (and for how long) to retain it
- securely delete information that is no longer needed for this purpose or these purposes
- update archive or securely delete information if it goes out of date
Personal data will need to be retained for longer in some cases than in others. How long we retain different categories of personal data should be based on individual business needs. A judgement must be made about:
- the current and future value of the information
- the costs, risks and liabilities associated with retaining the information
- the ease or difficulty of making sure it remains accurate and up to date
The appropriate retention period is also surrounding circumstances, any legal or regulatory requirements or agreed industry practice. At the end of the retention period, or the life of a particular record, it should be reviewed and deleted, unless there is some special reason for keeping it.
12. Data Subject Rights
You (the patient) are the data subject in this context.
- The Right to Data Portability
- This allows individuals to obtain and reuse their personal data for their own purposes across different services. It allows them to move copy or transfer personal data easily from one IT environment to another in a safe and secure way, without hindrance to usability. Some organisations in the UK already offer data portability through the ‘midata’ and similar initiatives which allow individuals to view access and use their personal consumption and transaction data in a way that is portable and safe. It enables consumers to take advantage of applications and services which can use this data to find them a better deal, or help them understand their spending habits.
- Right of Erasure
- The right to erasure is also known as ‘the right to be forgotten’. The broad principle underpinning this right is to enable an individual to request the deletion or removal of personal data whether there is no compelling reason for its continued processing. GP practices and other healthcare providers are EXEMPT from this.
- Right of Rectification
- Individuals are entitled to have personal data rectified if it is inaccurate or incomplete. If you have disclosed the personal data in question to third parties, you must inform them of the rectification where possible. You must also inform the individuals about the third parties to whom the data has been disclosed where appropriate.
- Right of Access
- Under the General Data Protection Regulation (GDPR), individuals will have the right to obtain: confirmation that their data is being processed; access to their personal data; and other supplementary information. These are similar to existing subject access rights under the DPA. The GDPR clarifies that the reason for allowing individuals to access their personal data is so that they are aware of and can verify the lawfulness of the processing.
- Right to Restrict Processing
- Under the DPA, individuals have a right to ‘block’ or suppress processing of personal data. The restriction of processing under the GDPR is similar. When processing is restricted, you are permitted to store the personal data, but not further process it. You can retain just enough information about the individual to ensure that the restriction is respected in future.
- Right to be Informed
- The right to be informed encompasses your obligation to provide ‘fair processing information’, typically through a privacy notice. It emphasises the need for transparency over how you use personal data.
- Right to Object
- Individuals have the right to object to: processing based on legitimate interests or the performance of a task in the public interest/exercise of official authority (including profiling); direct marketing (including profiling); and processing for purposes of scientific/historical research and statistics.
- Rights Related to Automated Decision Making and Profiling
- The GDPR provides safeguards for individuals against the risk that a potentially damaging decision is taken without human intervention. These rights work in a similar way to existing rights under the DPA. Identify whether any of your processing operations constitute automated decision making and consider whether you need to update your procedures to deal with the requirements of the GDPR.
13. Further Information is Available From:
Please see the Information Document tab for the TPP Data Sharing Document.
Additional Privacy Notice Information:
Physical Health Checks for People with Severe Mental Illness (PHSMI): GDPR information – NHS Digital