Introduction

The NHS uses information to manage patient care and plan services.

This information is called data.

The NHS in England does not keep patient and healthcare data on one computer system.

So, patients might need to explain their medical history to different NHS staff.

What is data?

Here are some examples of data that the NHS needs to keep a record of:

• the number of beds that are empty
• the number of beds that are in use
• patient information about your health  
• information about your care and treatment
• Personal data such as a patient’s name, address and date of birth

Improving the way the NHS in England keeps information will lead to:

• better care
• better health
• more lives saved.

The COVID-19 vaccination programme is a good example of using patient information to give millions of people their COVID-19 vaccine.

The federated data platform or FDP is a new computer software that will be used by:

• NHS trusts that run local hospitals
• the 42 integrated care boards across the NHS in England

Integrated care boards are health and care teams working together.

The FDP means NHS organisations can:

• connect the patient information they already have in a safe and secure way
• support NHS staff to provide better care by reducing the time the have to spend checking and finding information about patients

The FDP will not include information from GP surgeries.

The FDP will only allow access to patient data to support patient care and to improve health and care services.

The NHS in England is made up of local hospital trusts, integrated care boards (local NHS organisations that plan healthcare and social care services for local people) and NHS England and will be responsible for all data kept in the FDP and will keep it safe.

Each NHS trust and integrated care board can access their own FDP and manage all their data.

Any software company that supports the FDP will not control the data and they will not be allowed to access or use patient information for any purpose, other than as directed by the NHS.

NHS staff can only access confidential information about the patients they look after.

Health and care workers who support NHS staff can also access confidential information, including:

• bed managers
• care coordinators
• social care staff who support patients to leave hospital

Other organisations cannot access NHS patient identifiable information.

The FDP will not need any new information to be collected.

We asked different NHS organisations to test software like the FDP.

We found out how they used the software to collect information about:

• the number of available hospital beds
• patients on their waiting lists
• what medication and equipment is available

We found out that using the FDP meant:

• shorter waiting times for patients
• operating theatres got better use, and more patients got the treatment they needed
• more people did not stay in hospital for longer than they needed to
• health problems were spotted quickly, and patients got treatment sooner

The NHS was fair and honest when they chose the company that makes the FDP software.

We did many checks to ensure we chose the right organisation for this work.

To make sure that the FDP is as secure as possible NHS England is also buying new privacy-enhancing technology.

This technology will be in place before any NHS organisation in England uses the FDP software.

NHS England works closely with the National Cyber Security Centre to make sure all information is protected from a cyber-attack.

The NHS will work with the public, patient groups and other organisations to understand their views on the use of data in the NHS.

The feedback from this work will help to make the FDP software better.

An FDP Advisory Group of patients and professionals will help to advise on:

• changes to the FDP
• how to explain these changes to the public

How does the federated data platform benefit patients?

The federated data platform (FDP) will support five important areas of NHS work:

1. Elective recovery

Elective recovery is managing the number of people on the waiting list for appointments or treatments.

The NHS waiting list has got longer due to COVID-19 and the high demand for hospitals.

The NHS organisations testing the FDP have seen better use of operating theatres and more patient treatments.

One NHS trust carried out up to 35 more operations every week.

2. Vaccination

The FDP will:

• support the vaccination of vulnerable people
• make sure different communities get fair and equal access to vaccines

3. Managing the health of people in a local area

The FDP will support the work of the integrated care systems to meet the health needs of the people who live in their area.

Integrated care systems are health and care organisations in a local area working together to offer services based on local needs.

Better information will play an important part in making sure that all groups get a good health service.

4. Care coordination

FDP software will support health and care organisations to have access to the information they need to help patients and to work better together and reduce the number of long stays in hospitals.

NHS organisations testing the FDP have seen long-term stays go down by 30%.

5. Managing equipment and medication

The FDP will support the NHS to:

• see where there may be shortages of medication and equipment and move these items to hospitals where there are shortages
• spend money on the right things

The FDP will not cover more than these five areas without consulting with members of the public, patients and other groups.

Questions that are asked a lot about the federated data platform

What is federated software?

Every hospital and integrated care board across the NHS will use their own federated data platform (FDP).

The hospital FDPs can connect with other hospitals in the same trust.

The FDP will make it easier for health and care organisations to:

• work together
• look at patterns and differences in data
• look at information by area, age, gender and organisation
• share new technology solutions

The FDP helps to:

• link different groups of information
• use this information more effectively for patient care

Why do we need a FDP?

The NHS includes many organisations that use information every day to manage patient care and plan services.

As this information is in lots of different places, this can make it difficult to:

• carry out large projects
• share information.

NHS patients have told us that we should make it easier for NHS staff to access the information they need.

When NHS staff can find the right information, they have more time to:

• offer the best care to patients
• start new healthcare projects

When the NHS keeps patient care information in one place:

• it is easier for health professionals to find the information they need to do their job.
• health professionals can spend more time on patient care

What information will be available on FDP?

The new FDP will:

• only include information that the NHS already collects and uses
• lead to better patient care by bringing together information in a safe way from:
  • hospital health records
  • waiting lists
  • operating theatres
  • staff timetables

Who can see this data?

The FDP will only give NHS staff access to patient identifiable information if they need to see it.

There will be clear rules about:

• who can access the information
• what they can see
• what they can do

What will the FDP do?

Every NHS trust and integrated care board has its own FDP.

NHS trusts and integrated care boards can share data such as:

• the number of beds in a hospital
• waiting lists for care and treatment
• staff timetables
• equipment and medication

What are the benefits of the FDP?

Chelsea and Westminster NHS Foundation Trust have used new software.

When all care staff could see tasks completed and tasks to be completed in one place, treatment for cancer patients was offered more quickly.

The software showed how long it took patients who may have cancer to get their first treatment. This has:

• reduced the waiting time for a first appointment by two days
• reduced the time to get results

So, patients spent less time worrying and waiting for the next steps in their treatment.

North Tees and Hartlepool NHS Foundation Trust is using software to  check every patient and work out why there are delays in leaving hospital.

The new system has led to:

• more time for clinicians to spend on patient care
• patients getting home from hospital sooner
• stays in hospital for over 21 days went down by 36%

Once in place, the FDP will connect teams and organisations that must work together to offer patient care.

The FDP will support local teams to:

• manage waiting lists better
• make better use of operating theatres
• organise staff timetable

The FDP will also help local health and care teams to:

• understand the health of the people in their area
• work out the best healthcare services to support people in their area
• work out the best ways to prevent ill health in their area
• find out where important supplies are stored
• notice when stock is running out
• keep track of what is available

The FDP will also mean NHS staff do not need to write so many reports.

Any new use of FDP must be supported by the law and follow the Information Commissioner’s Office guidance.

How is patient information protected?

Identifiable patient information stays with the NHS organisation where the patient gets care, such as the hospital trust.

NHS rules mean only staff who need the information can see it.

All use of patient information in the federated data platform (FDP) must:

• only be used to help care for patients directly, or to plan services for patients
• follow the current law, including the Data Protection Act 2018

Can patients opt out of their data being shared in the FDP?

Currently, patients can not opt out of sharing their identifiable data in the FDP as it is only used for the treatment and care of patients.

The FDP uses data for direct patient care. Such as:

• booking a patient in for an operation
• data that does not identify an individual – in these cases opt outs do not apply

To find out more about using patient information and the NHS and keeping data safe, you can visit: Powerful moments, powered by NHS data – NHS Digital

The Department of Health and Social Care has consulted members of the public about the use of patient
information.

The Patients Association has also put out a report about the public, their information and the health and care system.

Other patient information is only used for direct patient care.

For example, when a member of NHS staff arranges a patient to leave.

Confidential patient information might also be used to:

• plan and improve health and care services

Can patients choose how their personal information in the FDP is used for their care?

The new FDP will be used by NHS staff to offer patients care.

So, it is assumed that patients have given consent to access their personal information.

If patients do not consent to their identifiable patient information being used to support their treatment, they should email england.contactus@nhs.net for information about withdrawing consent.

If a patient does not consent, it might affect their care.

How can the federated data platform help patient care?

Here is an example of how the federated data platform (FDP could be used.

An elderly patient has been in hospital but is now well enough to leave.

But they cannot leave hospital because they need a bed in a care home.

Health and care staff are spending a lot of time calling local care homes to find a bed.

The FDP will make it much easier for staff to find an available bed in a local care home or a virtual ward at home.

In a virtual ward, medical professionals support a patient at home.

The clinician can talk to the patient about their choices and decide the next steps.

The FDP will:

• give clinicians more time as staff will not need to call different care homes.
• support patients can make decisions about their care
• support patients to leave hospital quicker and go to the right place

This also means there is a bed for a new patient who needs care because the previous patient is well enough to leave hospital.

Can patients access their information?

Under Data Protection law, everyone can ask for a Subject Access Request.

A Subject Access Request is when you ask for information from an organisation that keeps data about you.

More information is available here: Your right of access | ICO

What are the penalties for organisations that misuse patient information?

If an organisation does not follow Data Protection law, the Information Commissioner’s Office can take action.

In the most serious cases, the biggest penalty could be up to seventeen and a half million pounds.

See here for more information about penalties: Penalties | ICO