Your privacy

Address

Royal Free London NHS Foundation Trust 
Anne Bryans House
77 Fleet Road 
London 
NW3 2QH 

Email

rf-tr.informationgovernance@nhs.net  

Address

Royal Free London NHS Foundation Trust 
Anne Bryans House  
77 Fleet Road 
London 
NW3 2QH 

Email

rf-tr.rfldpo@nhs.net  

Address

Dr Kilian Hynes
Royal Free London NHS Foundation Trust
Barnet Hospital
Wellhouse Lane 
Barnet, Hertfordshire
EN5 3DJ

Email

kilian.hynes@nhs.net

The main reason we collect information about you is for your direct care and treatment to ensure safe and high-quality care for all our patients. 

We also collect and use information for other purposes such as research. Detailed information on our purposes and your rights can be found via the links at the end of this notice. 

To be able to provide you with care and for our other purposes, we need to collect information about you. This includes: 

• name 
• address 
• date of birth 
• NHS number 
• next of kin 
• diagnosis 
• treatment 
• hospital visits 
• allergies 
• health conditions 

The trust also records CCTV images for the prevention and detection of crime; this may include body worn video and audio recordings. 

The people who care for you use your information and records to: 

• provide a good basis for all health decisions made by you and your care professionals 
• make sure your care is safe and effective 
• work effectively with other organisations providing you with care 
• research  
• to comply with legal obligations 

Sharing your information with other NHS organisations

Sometimes we need to share your information with other organisations to:  

• check the quality of care (called clinical audit) 
• collect data regarding public health matters 
• ensure NHS funding is being allocated appropriately 
• help investigate any concerns or complaints you may have about your healthcare 
• teach healthcare workers and help with research and planning 

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 is not needed. 

We will keep your personal data in line with the retention periods detailed in the NHS retention schedule.

You have rights regarding your information, these rights vary depending on our reason for using use personal information.

Your data protection rights are: 

• Right of access — you have the right to ask us for copies of your personal information.  
• Right to rectification — you have the right to ask us to rectify personal information you think is inaccurate. You also have the right to ask us to complete information you think is incomplete.  
• Right to erasure — you have the right to ask us to erase your personal information in certain circumstances.  
• Right to restriction of processing — you have the right to ask us to restrict the processing of your personal information in certain circumstances.  
• Right to object to processing — you have the right to object to the processing of your personal information in certain circumstances. 
• Right to data portability — you have the right to ask that we transfer the personal information you gave us to another organisation, or to you, in certain circumstances. 

You are not required to pay any charge for exercising your rights. If you make a request, we have one month to respond to you. See our contact details at the top of the page.  

Not every right applies all of the time. Explanations on your rights can be found in the detailed privacy notices at the bottom of this page. 

Data is any information about you or your health. It can mean your name, your date of birth, NHS number or your address.
It can also mean your blood test results or results of any other tests carried out, such as a scan or your medical history.

When you come to hospital, we ask you for information about yourself.

Clinicians, such as doctors and nurses, need to find out as much as possible about your health so they can provide the best treatment for you.

This information is recorded and used in many different ways. It allows us to contact you if we need to, and it allows us to make an accurate diagnosis and give you appropriate treatment.

In order to provide you with appropriate treatment, we need to share your data with a range of organisations who are experts in their field.

For example, like most other trusts, we keep your patient records in a variety of computer systems which may be run by a third-party organisation. 

We have a data-sharing agreement with the third-party organisation which sets out the rules for how your data can be shared and used.

We always want the world’s best technology and equipment to help us deliver world class care. That is why we work with other organisations, the world-leaders in their fields.

We share data with other healthcare organisations, such as GPs or other hospital trusts in order to ensure continuity of care. We also share data with a number of different expert organisations.

The data is only ever shared on a ‘need to know’ basis, which means the data is shared only with those who need to see it in order to provide you with appropriate care. 

We currently have a number of data sharing agreements with organisations which provide a range of different services for the trust and enable us to provide the best quality care.

This includes IT organisations, those which process blood test results or provide clinical alerts which help staff make quick diagnoses, and the company that provides the trust email system.

The Data Protection Act and General Data Protection Regulation control how your personal information is used by organisations, businesses or the government.

Under the act, the Royal Free London NHS Foundation Trust is defined as a ‘data controller’ of personal information, which means we are responsible for the data. 

We collect information to help us provide and manage healthcare to our patients and the organisations we share data with are known as the data processors. 

The trust is registered with the ICO, which regulates how information is shared (registration number Z6460180). 

At the trust there is a Caldicott Guardian, a data protection officer and a senior information risk owner, who all have a responsibility to ensure patient data is kept safe and only shared with those who need to see it.

A Caldicott Guardian is a senior person responsible for protecting the confidentiality of patient information and enabling appropriate information-sharing. Each NHS organisation is required to have a Caldicott Guardian. 

The name Caldicott is taken from Dame Fiona Caldicott, who was appointed the national data guardian in 2014.

At the Royal Free London, the Caldicott Guardian is Dr Kilian Hynes. If you have any concerns about your data you can contact him by email: kilian.hynes@nhs.net.

The data protection officer is a designated person within an organisation who is responsible for ensuring that the organisation complies with the Data Protection Act 1998 regulations.

The SIRO is responsible for the overall information risk policy and risk assessment process, ensuring we have a robust incident reporting process for information risks. The SIRO reports to the trust board.

A data sharing agreement is a signed agreement which sets out the rules for sharing data. The agreement is between the data controller (the Royal Free London) and another data controller or a data processor — the third -party organisation who uses the data to help us provide care.

The majority of the time, data is shared electronically using industry standard security techniques. Occasionally, there is paper -based sharing such as post or secure courier.

Unless we can share your data with a range of expert providers, we are unable to deliver planned healthcare to you safely.

As a consequence, we do not generally allow patients to opt out of the data sharing agreements we have unless in exceptional circumstances. 

If we disclose your data to someone who is not authorised, this could be reported to the ICO, which is a national regulator for information. 

The ICO will investigate any claim that there has been a breach of the data protection rules. There are a number of different actions that can be taken if such a breach occurs, including issuing a fine and enforcement notices.

The trust has an obligation to report any breaches of data protection rules to the ICO itself.

The ICO looked at the way patient data was used to test Streams for safety. This process was first governed by a partnership agreement signed between DeepMind and the Royal Free London NHS Foundation Trust in September 2015, which was superseded by an agreement signed in November 2016. 

The focus of the investigation was on the Royal Free London as the data controller, and the ICO raised concerns about whether we could have done more to inform patients that their information was being processed to test the safety of the Streams app and the amount of information that was processed.
The ICO concluded that we had not done enough to inform patients that their information was being processed by DeepMind during the testing phase of the app.

The ICO said there was a lack of transparency about how we were using patient information to test the new app and therefore patients could not exercise their statutory right to object to the processing of their information.

The ICO asked us to give undertakings to take certain steps, including commissioning an independent third-party audit, which we have done (see below). 

We continue to be of the opinion that the use of live data during the testing phase of the app was critical to ensuring it could safely be deployed on our wards. We have asked for greater clarity about how trusts like ours can test new technology to ensure it is safe without using real data.

We take seriously the findings of the ICO and have signed up to deliver all of the undertakings — continuing to be open and transparent about how we use patient information and conducting a third-party audit of our current processing arrangements with DeepMind.

This project is one of the first of its kind in the NHS and we recognise that there are clearly lessons which can be learnt from our experience during the testing phase of the Streams app.

These lessons will be applicable to the whole of the NHS and we would welcome new guidance from the ICO and the Department of Health and Social Care about how hospitals like ours can test new technology which is being delivered in partnership with third parties. 

One lesson is to provide greater transparency. We are now doing more than any other hospital trust in the country to tell our patients and the public how we use their information. 

This includes a detailed section on our website, with a Q&A and an animation film which explains what happens to their information when patients come to our hospitals. 

We have also displayed guidance about how patients can opt out if they do not want their information to be shared with third parties. 

We have produced patient information leaflets which answer common questions about how we use and share information which have been distributed across our hospitals. Posters have been displayed in high footfall areas of our hospitals alongside banners for main reception areas.

We also entered into a new agreement with DeepMind which came into effect in November 2016 and with which the ICO has not expressed any concerns.

The National Data Guardian has acknowledged that there is a need for further guidance about how hospitals and other organisations should develop and test new technologies where that work might require the use of identifiable patient data at some stages.

We do not believe it would be possible for the Royal Free London to ever sign off a product like Streams as clinically safe had it not been tested using real patient information. 

We believe that the five-year period of data which we used to develop the app was absolutely crucial to demonstrate its safety before it was made available for use on the wards.

Streams is a secure instant alert app which delivers improved care for patients by getting the right data to the right clinician at the right time. 

Similar to a breaking news alert on a mobile phone, the technology notifies nurses and doctors immediately when test results show a patient is at risk of becoming seriously ill, and provides all the information they need to take action. 

Each year, many thousands of people in UK hospitals die preventably from conditions like sepsis and acute kidney injury, because the warning signs are not picked up and acted on in time.
Streams integrates different types of data and test results from a range of existing IT systems used by the hospital.

Because patient information is contained in one place — on a mobile application — it reduces the administrative burden on staff and means they can dedicate more time to delivering direct patient care.
The Streams app was built in close collaboration with clinicians at the Royal Free London and it is already helping them to provide better, safer and faster care to our patients. 

Nurses report it is saving them around two hours each day — time which would previously have been spent looking through paper patient notes.

Yes, it is currently being used by clinicians at the Royal Free London to help identify patients at risk of acute kidney injury. We hope it will be developed to help improve care for patients with conditions like sepsis in the future.

We took a safety-first approach by testing Streams using real data in accordance with standards issued under the Health and Social Care Act. 

This was to check the app was presenting patient information accurately and safely before being deployed in a live patient setting. 

Real patient data is routinely used in the NHS to check new systems are working properly before turning them fully live.

The app has been through a rigorous user testing process and has been registered with the Medicines and Healthcare products Regulatory Agency as a medical device.

You can read this story of just one of the many patients Streams is now helping. 
 

Yes. We are proud of our partnership with DeepMind. We have learnt lessons from the testing phase of the app and will be signing up to the undertakings issued by the ICO.

We are committed to the partnership with DeepMind, which we entered into in November 2016, which incorporated much of our learning from the early stages of the project.

We are determined to get this right to ensure the NHS has the opportunity to benefit from the technology we all use in our everyday lives. 

We must embrace the opportunities which come from working with a world-leading company such as DeepMind to ensure the NHS does not get left behind.

The Royal Free London is the ‘data controller’ and has been in control of all patient data at all times. Patient data can only be used on the instruction of the hospital.

The partnership means that the Royal Free London has allowed DeepMind to process the data only on its behalf and only for the provision of Streams, and this is similar to the way we work with many other external IT companies.

It has always been held to the very highest standards of security and encryption. There has been no “data mining” or AI research on this data. 

The data used to provide the app has always been strictly controlled by the Royal Free London and has never been used for commercial purposes or combined with other Google products, services or ads — and never will be. 

It can and will only ever be used to help improve hospital care, under the control of the Royal Free London. 

Our patients have the right to withdraw and refuse consent to information sharing at any time, but note that not sharing information may affect the quality and safety of the care they receive. 
 

The undertakings given to the ICO included commissioning an independent third-party audit into Streams. The audit was carried out by Linklaters LLP. 

Their conclusion is that our use of Streams is lawful and complies with data protection laws. While the audit identified areas in which further improvement could be made, it contains the important conclusions set out below:

• DeepMind only uses patient information for the purpose of providing Streams. It does so under the direction of the Royal Free London and in strictly controlled conditions. DeepMind is not permitted to use patient information for any other purpose.
• Streams does not use artificial intelligence. Instead, it implements a simple decision tree used across the whole of the NHS.
• The audit revealed nothing that casts doubt on the safety and security of the patient information used in Streams. The audit confirmed appropriate systems and controls are in place to protect patient information.