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One year on… the NHS Federated Data Platform (NHS FDP)

In 2024 the NHS FDP became operational, an IT software system designed to bring together NHS patient data from many different systems into one secure and controlled platform. The tool aims to enable the various data systems used in the NHS in England to connect, and patient data to be shared between different NHS services when needed, encouraging services to work together to provide better, more efficient, consistent and joined up care.

Now one year on from the implementation of the NHS FDP, we’ll explore the use and impact of the platform and how patient health data is being used.

• The NHS FDP has been rolled out across more than two thirds of the NHS.
• 87 NHS acute hospital trusts and 28 integrated care boards in England have signed up and are using the platform.
• New data shows that hospital trusts using NHS FDP have each treated more patients in hospital theatres by using the theatre scheduling tool, which has allowed better, more efficient use of resources ensuring available theatre slots are used.
• On average 114 additional patients have been treated in theatres every month since introducing the tool.
• Access to cancer care has been sped up (appointments are approx. 2 days earlier).
• Patients have shorter lengths of stay in hospital.
• Waiting lists have been reduced - system identifies duplicate entries on the waiting list, which once noticed are removed safely meaning waiting lists are accurate and patients are seen quicker.

There’s no denying the evidence presented by NHS England – patients are receiving better care as a result of the NHS FDP. Official feedback on the use of the tool suggests real, tangible, and positive impact for patients, their care and health outcomes.

Whilst the above findings demonstrate how patient data is being used by the NHS FDP to positively impact direct patient care, the public remain sceptical regarding the platform’s use of patient data and ask; how is patient data really being used in the NHS FDP? Is patient data being used for purposes beyond direct care? What else might be happening with the data – what’s the full story?

The delayed release of the NHS FDP’s Data Protection Impact Assessment has further heightened feelings of uncertainty and distrust amongst the public. This apparent lack of transparency and openness regarding the use of patient data, allows the public to think secrets are being kept from them, suggesting those in control of the data (NHS England and Palantir) cannot be trusted and their motives for wanting and using the data questioned.

The involvement of Palantir has been controversial since the beginning, when the contract to build and develop the NHS FDP was awarded in 2023. Now, with the announcement of NHS England being abolished, questions are being raised about who will become joint controller of the data with Palantir? At present, little is known or understood about what will happen next, who will become the new data controller in the absence of NHS England… will this be the Department of Health and Social Care? The Secretary of State? This uncertainty is fostering speculation and concern over the role of political agendas in prioritising and delivering care.

These concerns and feelings of uncertainty are not uncommon when it comes to public attitude toward data sharing initiatives. The power of being transparent and responsive to public opinion and concern must not be underestimated, listening to and engaging with the public is of paramount importance. Communicating with the public in a coherent and accessible way will encourage better understanding, whilst addressing and alleviating concerns around the misuse of their patient data.

The NHS FDP clearly has the potential to make positive change to real people and help the NHS to deliver better and more consistent care across England. The snagging point for the public is the use of patient data to do this, and whilst using this data for delivering better direct patient care is widely accepted, feeling confident in how the data is used when managed within the NHS FDP is yet to be achieved. Platform providers and data providers need to make clear and acceptable commitments to the public regarding the use of their data, and must follow through with these promises, failure to do so could result in the rejection of data sharing practices and will perpetuate negative public perception and attitudes

What does the health and social care system need to do for people to feel confident in how their data is used? Findings from a recent public engagement programme

Last year NHS England and the Department for Health and Social Care (DHSC) commissioned Thinks Insight & Strategy (a research and strategy agency) to begin a large-scale public engagement programme around the use of NHS patient data for delivering better care and research. The programme aims to build and maintain public trust in how data is used across health and social care. Phase 1 of the programme is now complete, and a report was recently published (26^th March 2025) detailing its findings.

The executive summary and full report can be found here.

Why have NHS England and DHSC commissioned a public engagement programme?

Public engagement is crucial to the success of digital and data transformation in the health service, it can help build trust and confidence in the decisions taken by the government and the NHS. Without public engagement, services cannot be informed by public views, attitudes or shaped by public recommendations.

Regarding data use, public engagement activities are important in sharing knowledge and building understanding about how health and social care data is used. Research shows that in the UK most members of the public are not aware of the extent to which health data is currently used, this was also noted as a finding in this report. Lack of knowledge and awareness fosters uncertainty amongst the public and allows the gaps to be filled with untrue narratives, leading to fear, concern and ultimately the rejection of data-sharing initiatives.

By engaging with the public in a transparent, meaningful and sustainable way, it’s hoped that a true understanding of current data use can be shared with the public, building confidence and trust.

What did Phase 1 of the public engagement programme involve?

Phase 1 focused on data deliberation, involving thoughtful discussion about data in the NHS and beyond, and addressed the following key question:

What does the health and social care system need to do for people to feel confident in how their data is used?

A wide range of methods were used for the data deliberation, including interviews, surveys, and small group sessions, conducted either online or face to face. Using a diverse range of data collection methods allowed a robust understanding of public attitudes to be achieved.

What were the findings from Phase 1 of the public engagement programme?

The engagement activities identified that the following conditions were key in building public confidence in the use of health and social care data:

• Allowing patients and public to understand the benefit and impact of data for research.
• Identifying clear benefit for the individual themselves or the greater good.
• Demonstrating impact such as improvements to treatment and diagnosis – evidence of the value and real-life impact of data use.
• Knowing about and understanding safeguards and principles in place to protect data.
• Meaningful and sustained public engagement – participants wanted to feel heard and that their views were being taken seriously by the NHS and DHSC.
• Transparency, de-identification, consent and clear opt-out mechanisms were all key conditions identified as important in building and achieving trust.

Public views were also collected on the following specific data-sharing topics:

• Secure Data Environments (SDEs)
• The value of data for research
• The use of a Data Pact as a form of information provision

Below is a summary of the findings from each topic discussed with participants, gauging public attitude and perspective.

To explore the findings in full and the suggested recommendations from Phase 1 of the programme, read the published report here.

Secure Data Environments (SDEs)

SDEs have been established by the NHS to store, manage and administer access to health and social care data for research. When discussing SDEs, participants were keen to know what measures were in place to protect their data and talked with facilitators about principles, processes, and safeguards of SDE governance and the responsibility of data access committees. The report identified the importance of clear communication with the public about safeguards in place to protect their data in helping to build trust in the use of SDEs and to realise the value in health and social care data.

Findings from the deliberations identified four clear priorities for policy makers to consider when deciding the rules that govern SDE data access. These were:

• Transparency of processes
• Consistent application of principles
• An inclusive process (diverse views and backgrounds)
• Efficient decision making

Realising the value of data for research and for the NHS

Participants were broadly in favour of the NHS charging for access to data to cover their costs and were keen for surplus to be made. Whilst recognising that money could be made by the NHS from research activity, participants felt strongly that this must be reinvested back into the NHS and not used as a replacement for existing NHS funding.

The purpose for access to be given was discussed and participants felt decisions must always be for public benefit and not be financially driven. The report also found that when generating value through research, participants believed all organisations involved must demonstrate that the benefits would be realised in England or the UK.

Participants also acknowledged the value of health and social care data being used for research on impact and benefit for individuals receiving care and the wider population. The report identified the positive role sharing case studies and hearing from researchers and patients had in contributing to this understanding.

A new method of information provision – introducing the Data Pact

This method of information provision was trialled with participants. It was a chance to gather views on how a Data Pact might work, understand what the public want to see, and to assess whether it would be a good method of public information sharing.

A draft Data Pact document was produced for the purpose of the engagement programme. Its aim was to set out clear commitments to the public around data use, hoping to give people confidence in how health and social care systems use their data. Overall participants felt quite confused about the draft Data Pact they were presented with, expecting it to be a legally binding document, rather than an information piece which provided details about existing laws, protections and the legal framework currently in place.

So, whilst the report found that a Data Pact could be a positive method of information provision if introduced (62% of survey respondents felt the Data Pact would increase confidence), it was clear that some things would need to be addressed before it was rolled out. The report recommends:

• The purpose of the Data Pact must be made clear.
• To rethink the term ‘Pact’ – participants felt this implied action not information, which led to confusion about its purpose and impact.
• Have multiple versions of the document with different levels of detail for different audiences.

Phase 1 of the public engagement programme aimed to explore what the UK health and social care system needs to do for people to feel confident in how their data is used. The deliberation activities allowed public views to be collected on areas of particular interest -SDEs, the value of data, and the use of a Data Pact. Through engaging with the public, the report highlights conditions considered key in building public trust and confidence around data use. It sets out recommendations for policy makers, the NHS and DHSC, regarding data use, safeguards and future engagement. As the programme continues into its next stage, we will continue to learn what is important to the public and understand how they can feel more confident in data use for research. The report demonstrates how vital and impactful public engagement is on changing perception and increasing confidence, achieved through building knowledge and understanding. However, it’s recognised that it is not enough for public engagement to just continue, it must be meaningful and significant for the public to feel truly heard and valued.

The Sudlow Review: A Call for Action

7 January 2025

In 2022 the Goldacre Review, exploring and advising on the use of health data for research and analysis in the UK, was published. Following this, Lord Darzi’s Review (2024) also explored the role of health data and called for a major ‘tilt towards technology’ to improve the ‘critical condition’ of our health and care system. The advances outlined in these previous Reviews rely on the effective and trustworthy use of health data, which the 2024 Sudlow Review was commissioned to explore in the context of the UK’s evolving health data landscape and will be the focus of this blog.

The Sudlow Review, commissioned by the Chief Medical Officer for England, the UK National Statistician, and NHS England’s National Director for Transformation, examines the UK’s ability to use data to improve healthcare, mapping existing strengths and identifying improvements to current approaches. It offers opportunity for policy makers to evaluate how data can be better managed to improve the public’s health, while maintaining privacy and public trust. It was decided that Professor Cathie Sudlow OBE would lead the Review in light of her expertise in pioneering data science initiatives.

The Sudlow Review, published on the 8^th November 2024, highlights the vital need for secondary analysis of patient health data and the role it plays in improving and extending lives. Whilst individual health data is imperative for patients’ direct care, it is also powerful in a wider sense, to help deliver equitable health, care and public services, along with research and innovation, with the potential to transform healthcare.

To do this, the data must be securely accessed by approved scientists for analysis, however the current complex UK data access infrastructure means data, if approved, can take months or even years to obtain. It is clear from the Review that crucial health research is being delayed or inhibited by confusing data access pathways acting as barriers rather than guardrails to the data.

Whilst the Review recognises and supports the importance of strict and robust data access arrangements around patient health data, the current access requirements and pathways are found to be unclear and complex, slowing down the possibility of generating timely research insights and improving healthcare. Consequently, the Review states that the current UK data landscape and inefficiency of systems for managing and accessing health data is letting patients, their families and society down.

The Review calls for change. It first suggests action from policymakers and healthcare leaders, identifying health data as a critical national infrastructure requiring careful leadership and vital investment.

It then goes on to make 5 recommendations for transforming the national health data ecosystem and overcoming barriers, which are summarised below.

1. All major national public bodies should agree a coordinated joint strategy to make England’s health data a critical national infrastructure.
2. Establish a national health data service for England, a service to support research and analysis.
3. Department of Health and Social Care should oversee and commission a strategy for ongoing, coordinated engagement with public and patients, professionals, policymakers and politicians.
4. Health and Social Care Departments across all 4 nations should set a UK-wide approach for data access processes and governance.
5. Develop a UK-wide system for standards and accreditation of SDEs, accelerating the safe use of health data.

The Review and the 5 recommendations can be viewed here.

Overall the Sudlow Review gives a very clear and honest picture of where we are now regarding data access within the UK’s data landscape. By acknowledging, highlighting and expressing concern and frustration about the issues, hopefully change will come with investment and value placed on the importance of health data. Implementing the Review’s 5 recommendations will enable safe and secure data use, allow new and exciting research to be carried out, and better healthcare delivered across the country.

Transforming Health and Care - Introducing the NHS Federated Data Platform

13 November 2023

When we use NHS services our health data is collected and recorded. This data makes up our electronic health record, and includes things like demographics (such as age, gender, location), presenting symptoms, previous conditions, medication details, test results, notes, diagnostic codes, to name just a few! Due to the rich information it contains about our health, this data enables us to receive the care we need, when we need it, and has the potential to save lives.

The impact of patient data has the potential to go even further, to help more people, improve care and save more lives. This is only possible if health data is unlocked and shared between services, which as of yet hasn’t been achieved in the NHS.

At present, individual health data is securely stored in systems specific to the NHS service used by the patient. Whilst this is invaluable in supporting patient care given when patients use that specific service, this data is also vital in follow-on care for the individual using other NHS services, and also more widely in understanding patterns, identifying problems and addressing health inequalities.

Whilst this data holds so much potential for helping with healthcare improvement, it currently remains securely stored in the original service, separate from other NHS systems, not following the patient. This often results in frustration from service users and staff, and has the potential for things to be missed and care to be delayed, as patients fall through the gaps between services. The negative knock on effect this has for both the NHS in working efficiently and consistently at scale, and in regards to patient satisfaction and health outcomes is huge, and is something the NHS are aiming to address through the development and implementation of the NHS Federated Data Platform (NHS FDP).

What is the NHS FDP, and how will it work?

The NHS FDP will have the functionality to enable the many different data systems used within the NHS in England to connect, allowing patient data from the different services to be shared when needed. The NHS FDP will permit information to be shared within a secure and controlled platform, so services can work together to understand patterns, solve problems and plan for the future, whilst ensuring patients receive better, more consistent care.

Why does the NHS need a shared platform? What are the benefits?

As previously mentioned, the current way of working with patient data is challenging for the NHS and has many knock-on effects for staff, patients, and the wider population. A platform where data can be shared safely amongst services is exciting and has the potential to revolutionise and transform the health and care of NHS patients and the wider population for the better. Increased awareness and knowledge of population health patterns leads to better understanding of health problems. It highlights health inequalities which must be tackled, whilst also recognising and encouraging necessary service and resource improvements based on the future health and care needs of the population.

The promise of a connected and more efficient NHS service through the successful implementation of the NHS FDP, comes with the hope for a better service for patients, service users and staff. However, lots of questions remain: Can this new platform live up to its promise of a streamlined NHS service? Can the new platform learn from the mistakes and failing of previous NHS patient data sharing initiatives and have the public’s support? Can this new platform be the solution to improving clinical outcomes and addressing health inequalities?

How will my NHS patient data be handled?

As with previous NHS data-sharing initiatives, the public rightly continue to question how their data is handled, who has access and what are the risks? In regards to the development of the NHS FDP the NHS plans to collaborate with a commercial supplier to build the system and software. Whilst procuring data systems from commercial suppliers is routine work for the NHS, this procurement has been in the spotlight due to the contract size and interest in the existing relationship the NHS has with one of the potential suppliers – US tech firm Palantir.

Whoever is awarded this contract to develop the NHS FDP, the public will want to know and be confident that the relationship and power dynamics of the arrangement are fair and that the NHS remains in control. The public have expressed worry that the NHS could get locked-in to a relationship with a supplier, and want assurance that the NHS will be able to end the partnership whenever they wish. Other concerns raised include: What will the supplier be able to access and do with my NHS patient data? What safeguards and guardrails are in place? Is the supplier trustworthy? The NHS must address these concerns and engage with the public in a transparent and honest way. Failure to do so or staying silent will fuel distrust and worry, allowing alternative narratives to take hold.

Are public concerns being addressed?

The NHS are not naïve to the previous failings and concerns raised by the public, as well as the deep-rooted anger and upset caused as a result of a lack of public engagement and awareness in previous campaigns - in particular the opt-out response to the care.data initiative in 2014, and its successor, GPDPR, which was also badly received in 2021. It is fair to say that public (and professionals’) trust in these NHS data sharing initiatives has been badly damaged and will require a lot of investment and meaningful engagement to move things forward in an open and transparent way.

The NHS has recognised this and are taking positive, proactive steps toward building public trust and awareness in the development of the new NHS FDP. There is a strong commitment to ensure the NHS FDP is developed and implemented in a way that is transparent and accountable to the public in how their health data will be utilised and who will have access.

Here are just some of the ways the public has been involved and have engaged so far in the development of the new NHS FDP:

• Public surveys and consultations: In 2022 the NHS published a consultation document on the FDP and received over 1000 responses from the public.
• PPI groups: Have provided an opportunity to provide feedback on agenda and plans, to ensure the outcome of the FDP meets the needs of patients and the public - shaping development plans.
• Public events: The NHS has hosted a number of public events to raise awareness of the FDP and gather feedback from the public. In 2023, a series of public events were held to discuss plans for the FDP, where questions and concerns from the public were addressed.

Other ongoing engagement activities with the public include; online surveys and social media engagement.

Addressing concerns and building trust will not be a quick fix, there will need to be detailed understanding of the public’s concerns, and meaningful engagement with the public so their voices are heard, to shape the project into something that is publicly accepted and most of all supported. In response the NHS has launched a £2 million public engagement campaign to actively involve patients in discussions about patient data and how their healthcare data will be utilised, and this will include continuous meaningful engagement work with the public in relation to the NHS FDP project.

What’s next?

The NHS FDP is expected to be operational in 2024 and recent pilots of the scheme have shown significant and measurable benefits.

One of the most important things the NHS must do moving forward is be transparent with the public and communicate openly the next steps, presenting the facts to the public clearly. Staying silent or keeping things quiet will only fuel worry and allow another narrative to fill the silence, breeding misinformation, suspicion and discontent, whilst exasperating the distrust left by previous NHS data-sharing initiatives.

Further information on the new NHS FDP can be found here via NHS England.

NB: Since writing this blog there have been new developments regarding the NHS data contract. In November 2023 NHS England awarded US tech firm – Palantir – a five-year contract worth £330m to set up and operate the NHS FDP. As expected, the response to Palantir winning this NHS data contract has been controversial, with concerns raised over the suitability of Palantir’s involvement. The British Medical Association has described this decision as ‘deeply worrying’. There will be some very difficult conversations to be had over the coming days and weeks.