Unlocking the power of data to improve patient care
Earlier this year, we blogged about new software that the NHS is procuring to connect data across the NHS – a ‘federated data platform’.
Digital systems have seamlessly integrated into our daily routines, simplifying tasks from international travel arrangements, to following the progress of our online purchases from warehouses (or restaurants and takeaways) to our front door.
They’ve also been part of how the NHS operates for decades. Clinicians and support staff use many systems every day, from GPs sending prescriptions to your local pharmacy, to local leaders planning the kind of services communities need, and national teams making sure that vital supplies get to where they are needed.
However, it is in the connection of these systems, and more specifically the data that the NHS generates and uses every day, where huge opportunity lies to improve how we support communities to be healthier, and to improve care for those who need it.
We have learned, through the COVID-19 pandemic, just how powerful connecting our data is – without doing so, we would not have delivered our world beating Covid-19 vaccine programme.
And since 2021 we’ve been piloting approaches to connecting data systems at scale to help with other important challenges, such as ensuring people can get elective care quicker.
The case for going further – for making sure that every part of the country has the ability to harness data for the benefit of their patients – is overwhelmingly strong. And the case for doing that nationally – delivering the best possible value for taxpayers by combining the NHS’ purchasing might, and also levelling up our capabilities in a fair and equal way across the country – is equally compelling.
So, throughout this year, we’ve been engaging with the public, system partners and stakeholders on designing what a national system should look like, as well as the protections it should afford to patients, who rightly want to know what data the NHS uses and for what purposes.
That work allowed us to invite bids from the world’s most capable data and technology innovators earlier this year. After a rigorous process, the successful bid is expected to be announced this autumn.
In this blog, we want to provide an update on what we have been doing since January to ensure that our decision-making is informed by experiences and perspectives from across the NHS, stakeholders and the public, and set out how we’ve ensured the procurement process is fair and transparent.
Designing a ‘federated data platform’ for the NHS
Drawing on the experience during Covid-19 mentioned above, and the perspectives of colleagues and patients coming out of it, since October 2021 we have been developing pilot approaches to connecting data systems beyond the vaccine programme.
Several ideas have been developed and tested in localised sites in England to support the recovery of elective services and care coordination. Our pilots have shown us how it helps bring waiting lists down faster and discharge patients from hospital more quickly.
The staff and clinicians we’ve spoken to at the pilot sites have shared impressive results:
- Local trials have enabled hospital trusts to deliver elective care better by identifying duplicate entries on their waiting lists.
- A discharge pilot helped one trust reduce the number of patients spending 21 days or more in hospital beds to 12%, against a national average of 20%.
- Cancer patients are receiving appointments on average 2 days sooner, expediting access to treatment.
You can read some of the case studies on our website.
The results from our pilots have given us absolute confidence that digitising and connecting data at scale, and importantly giving local teams the tools to be able to interpret that data easily to inform the actions they can take, can help transform how we work and improve the experience patients have when accessing NHS services. We have therefore been working hard to make this technology available to benefit everyone who uses the NHS.
We’ve made bold moves to transform the NHS. From reorganising into integrated care systems, to the launch of the NHS Long Term Workforce Plan, and investing in technology, we are ensuring the NHS meets the needs of patients now and is sustainable for future generations.
The next pivotal moment is digitising and connecting data through what we have called a federated data platform.
The federated data platform will allow better use of data, helping to connect local NHS trusts, integrated care systems and national systems.
Sitting on top of existing systems and IT infrastructures, the platform will enable NHS organisations to bring together operational data – currently stored in separate systems – to support staff to access the information they need in one safe and secure environment. This could be the number of beds in a hospital, the size of waiting lists for elective care services, staff rosters, or the availability of medical supplies. It will also help us respond to the demand from patients who are seeking greater flexibility in how and where they access services and receive care. It will help people make choices that work for them.
Engagement
The views of staff and patients alike has been instrumental in helping to shape the programme, and we are incredibly grateful to everyone who has been involved in challenging us and providing oversight. We know we need to do more, and we remain committed to engaging both public and professional stakeholders and ensuring that their voices influence our planning.
Over the past 18 months, we have engaged with patients, trusts and integrated care systems, as well as experts from across data science, cyber, privacy and security, as summarised below.
We have welcomed the support of the National Data Guardian’s team in helping to shape our public engagement plans through recommendations and input into our public facing information about the programme.
Our public information about the programme, which was published ahead of the start of the procurement process, was co-developed with privacy experts patients, the public, and representatives from patient voice groups to ensure our messaging was meaningful and accessible. It has been updated to ensure there has been the maximum possible transparency in the procurement process to date, and this will continue to be the case.
As we move into the next phase of delivery, we will be setting up a public and patient advisory group to support the programme. Another significant step we will be taking in the coming weeks will be the development of a patient promise ‘data pact’ – a key commitment in the Data saves lives: reshaping health and care with data strategy (2022). This will underpin not only the federated data platform, but also wider data initiatives. As the programme moves from procurement to implementation, we will also be taking part in the national engagement programme on health data due to start in early 2024. Through this process, the public will have a further opportunity to help shape our approach.
We have worked closely with trusts and integrated care systems to inform our procurement requirements, with a clear focus on understanding how the platform could best help them care for, and improve the health of, the communities and patients they serve. Once implemented, the platform will be another tool that NHS organisations can choose to use to help solve the problems that matter to their staff and patients, helping to support existing decision-making and engagement processes.
Fair and transparent procurement and decision-making
We know how important it is that our decision-making is fair, open and transparent – and is seen to be so – at every step of the procurement process. This is not only about ensuring public funds are spent wisely, it is also about maintaining trust and confidence in the process and the platform.
The procurement process has been led by the NHS England Commercial team on behalf of the whole NHS in England and was open to any supplier who wanted to participate. Like all NHS England procurements, it is subject to rigorous governance and transparency, as part of which it sets out its requirements and evaluation criteria in advance and independently of existing suppliers.
Criteria and scoring methodology were shared with all bidders and were assessed by a group of evaluators representing not just NHS England, but stakeholders across trusts and integrated care systems who are potential users of the platform.
We have worked with the Professional Records Standards Body (PRSB), a membership comprising of senior clinicians, to take on board their feedback, and with technical experts to inform platform requirements and ensure the correct assessment of proposed solutions.
Protecting patient data
Patients have told us how important data security is to them, and it is important to us, too. That’s why ‘privacy by design’ has been baked into the programme from the very beginning.
The use of the data in the federated data platform will always remain under the full control and protection of the relevant NHS organisation. Whichever software suppliers are ultimately chosen to help build the platform will never hold or have access to NHS data for any purpose other than as directed by that NHS organisation. Platform requirements do not include or enable access to NHS data by third parties, and data access will never be provided for marketing or insurance purposes.
We will keep patient information safe and be transparent about how it is used, while also explaining the choices patients have about how their data is used.
As a central part of the programme we are investing in privacy enhancing technology (PET) to support safe data access and use, and we are procuring a new NHS PET solution to help us do this. It will apply privacy enhancing techniques such as data minimisation and de-identification to ensure that personal identifiers are removed from datasets where appropriate to protect patient confidentiality. Access to NHS health and social care data will be carefully controlled, with only authorised users granted access to data, and even then, only to the specific data they need for approved purposes.
Although the NHS already has some data processing capabilities, the federated data platform will help us to advance significantly, enabling us manage data more efficiently and more securely. NHS organisations are already required to comply with data protection law when handling the existing data flows and the same law will continue to apply. This means there will always need to be a lawful basis for the collection and processing of personal information (including special category information) through the platform.
Open standards, avoiding vendor lock-in
The NHS procures software from external suppliers in a wide range of areas, from NHS-specific solutions like patient health records systems, through to standard word processing software and email platforms used by virtually every public service and private business.
As technology has evolved, we have learnt how important interoperability – or how these systems can ‘talk to’ each other – is. It’s vital that any platform we develop maintains flexibility to tap into solutions from a range of suppliers. This is why the technical requirements for the contract dictate that the platform must be compatible with the NHS service standard, as well as Government Digital Service and open standards principles. As well as ensuring best practice, this will help avoid vendor lock-in, allowing us to move to a different supplier in the future without disruption.
Follow progress
You can find out more about our plans for the federated data platform and what it means for patients, the system and trusts on our website. Or if you have a specific question, you can’t find the answer to elsewhere, you can contact the team by emailing england.FDP.enquiries@nhs.net
We know that if we get this right, we will help transform patient care and ensure the sustainability of the NHS for generations to come. We also know that ‘getting it right’ has to mean that we not only keep people informed about what we’re doing but allow those who will use or benefit from the system to help shape it, too. We look forward to continuing to share our progress with you.