Live and forthcoming policy debates

What is it?
The Government has announced the creation of a single, joined-up patient record that ensures every provider across both health and social care services have access to the same information. The aim is to improve safety, reduce duplication, support joined-up decision making, and give patients a clearer picture of their own health via access to their records in the NHS app.

What is the history?

• This ambition is not new. It builds on many years of work, including Summary Care Records and Shared Care Records and expanded access to patients’ own records via the NHS App..
• The vision is to go further and faster—connecting data across all care settings, enabling secure access on a tiered basis, and supporting both individual care and broader uses, including research and planning.

Benefits

• In NHS England and the Department of Health and Social Care’s National Engagement on Data, a strong majority of participants favoured the creation of a Single Patient Record. The creation of a Single Patient Record promises to improve coordination of care and empower patients by providing improved access to (and control over) their own record.

Key considerations

• Our research shows that most people think there already is a single patient record – and around half of people report not having seen their own records despite roll out of this functionality in the NHS App. Clear communication is needed about what is changing, and why.
• The single patient record is also being positioned as a way to enable access to data for research, innovation, and system-wide insight with de-identified data available ‘by default’ for secondary uses. However, it’s still unclear how access, oversight, and accountability – or public choice – will be managed.

Find out more 
Single Patient Records in the NHS: a long-read blog, NHS England National Engagement on Data cohort 2 report

What is it?
The Health Data Research Service (HDRS) aims to create a streamlined, secure way for researchers and innovators to access NHS data across England, via a single point of entry. It’s being positioned as a national service to support ethical data use for public good, enabling everything from clinical trials to policy evaluation.

What is the history?
The development of a health data research service was recommended in the Government-commissioned Sudlow Review. It follows years of investment in research data infrastructure, including the work of Health Data Research UK (HDRUK) to create a single ‘Gateway' for researchers to find the data they need, NHS England's network of Secure Data or Trusted Research Environments (SDEs/TREs), and initiatives like NHS DigiTrials which support faster recruitment of patients into clinical trials. The HDRS aims to build upon these developments – whereas the existing health data Gateway helps people find the datasets they need, the HDRS is set to be a managed solution that lets people access the data.

Benefits

• By providing a single point of access to health datasets, the HDRS is likely to simplify access to data for researchers and innovators, speeding up research and leading to improved patient outcomes.

Key considerations

• The service must balance access, speed, and safety—ensuring researchers can work efficiently without undermining privacy or security.
• Questions remain over long-term governance, including how public benefit will be defined and safeguarded.
• The Health Data Research Service must build strong foundations from the start to garner public trust and learn from past mistakes: transparent governance, clear accountability, public involvement in decision-making and an ongoing commitment to delivering measurable public benefit.

Find out more
The Sudlow Review, HDRS announcement

What is it?
The government is reviewing the current NHS Opt-Out landscape, which is designed to give people choice over how their identifiable data is used beyond their individual care. Right now, the system is complex, with different opt-outs that aren’t always clearly explained or consistently applied. People often don’t understand the difference between Type 1 opt-outs (which are made via a GP), and National Data Opt-Outs (secondary uses), and other local or research-specific opt-ins/opt-outs.

What is the history?
The current National Data Opt-Out was introduced in 2018 follow a review led by Dame Fiona Caldicott into data security, consent and informed choice in health data.

Benefits 

• The idea is to provide a clearer and more genuine choice for patients. There has been an increasing number of Ministerial exceptions to the National Data Opt Out, so reform might bring transparency and alignment with public expectations - ensuring people’s choices are genuinely respected while still enabling data to be used in ways that benefit the public.

Key considerations

• Low awareness of the choice and confusion among members of the public about whether they have opted out limit its meaningfulness as a measure of public sentiment.
• The current policy only allows people to opt out of secondary use of their data entirely. There is no mechanism to make a more nuanced choice; not enough clarity on where the line is drawn between individual care, planning, and research; nor enough information to support people to make an informed decision. Any changes to the policy must balance agency and choice with practical workability and collective benefit.

Find out more
Our guide to Opt-Out policy, Review of Data Security, Consent and Opt-Outs,

What is it?
The Federated Data Platform (FDP) is a national tech infrastructure project that links data held across NHS organisations, allowing multiple databases to function as one without consolidating or moving the data. It’s designed to support operational tasks such as discharge planning, elective recovery, and population health management.

What is the history?
The idea of federated data access gained momentum during COVID-19, when tools like Palantir’s Foundry platform helped aggregate real-time reporting data across the NHS so that decision-makers could track the virus, safeguard the most vulnerable and ensure Personal Protective Equipment – and latterly vaccination stocks - were in the right place at the right time. The FDP extends this model of operational data collection and analysis for standard (non-COVID) uses such as reducing and managing operating theatre waiting lists.

Benefits

• The Federated Data Platform is demonstrating improvements in coordination across organisations, with benefits such as enabling patients who are medically fit to be discharged earlier and clearing waiting lists faster.

Key considerations

• Commercial involvement—especially the role of Palantir, the primary software supplier—has sparked concern from campaigners and politicians, given its associations with defence and surveillance work and the procurement process.
• Transparency about what the platform will actually achieve, especially in areas where there are already local solutions in place which are in some cases more effective than what the FDP offers.
• There are ongoing concerns about data sovereignty, accountability, and long-term vendor lock-in, particularly as contracts are extended without public scrutiny.
• Buy-in from NHS staff will be critical to win public confidence, particularly given protests by health workers over Palantir's involvement.

Find out more
NHS England’s webpage about the FDP , Explanation of Palantir’s Foundry software from the Patients Association, November 2023 blog about the FDP

What is it?
The intention to abolish NHS England and the earlier merger of NHSX and NHS Digital into NHS England have raised the questions about the future of national data governance. With a growing number of high-profile data initiatives – including a new Single Patient Record, Health Data Research Service and National Data Library – and lack of clarity on what structures for decision-making, delivery and oversight will look like, there are questions about fragmentation and accountability. In addition to changes to governance structures, the Life Sciences Sector Plan published in July 2025 included commitments to reform the Health Service (Control of Patient Information) Regulations of 2002 as well as reforms to the wider NHS research data access and approvals and governance system by the end of 2026.

Benefits

• Such significant changes presents a rare opportunity to get governance and safeguards right from the start. Clinical and public buy-in could be the key to finally unlocking the potential of GP data for research in a way that earns trust and reflects the values of the health system.
• Plans to establish a common framework for governance around health data for the four nations of the UK could simplify processes for accessing data, speeding up research.

Key considerations and why this matters

• The NHS is increasingly data-driven, but the systems and structures for managing data use have been subject to significant change going back to the merger of NHSX and NHS Digital into NHS England in 2023, with powers over data increasingly centralised in the Government.
• Under new reforms to the NHS operating model, responsibilities for data previously held in ICSs are set to be split across the system. For instance, responsibilities for data are moving to the national level, whilst IT and digital leadership is being transferred to providers, and population health management using data staying in the ICS, potentially leading to confusion over roles and responsibilities and difficulties with joined-up decision-making.
• There is an urgent need clarity over leadership, governance and lines of accountability, and the creation of a credible, accountable organisation for data governance and decision-making: a body that can provide strategic leadership and ensure independent oversight (outside of the Government).
• With a lot of the legislation underpinning plans to develop the Single Patient Record and App left to secondary legislation with limited parliamentary scrutiny, it is currently unclear whether current rules around data access and data protection will meet public expectations around data safeguards and benefits.

What is it?
There are plans to link health data with datasets from across government (e.g. education, housing, justice, benefits) in a National Data Library to enable deeper insight into the social determinants of health and support targeted interventions.

What is the history?
This approach has precedents in academic research and pilot projects such as the Administrative Data Research Network (ADRN) and more recent Data for Research and Statistics (DRS) programme. However, large-scale cross-government data use has often been slow due to legal, technical, and ethical hurdles.

Benefits

• Linking health data with non-health datasets can improve understanding of social determinants of health and help target services to the needs of the population. For instance, in Dorset, local authority data was used to help address the non-health needs of hospitalised homeless patients.

Key considerations

• There is not yet a clear statutory or ethical framework for how such data will be linked, accessed, or governed – and what role the newly announced Health Data Research Service will play – so there are questions to be answered to ensure initiatives meet public expectations around privacy and governance.
• Public trust is fragile, and research shows there is limited public support for linking NHS data with other non-health data, particularly as local authorities are the least trusted organisations with health data.
• Any success will depend on clear rules, independent oversight, and strong safeguards against discriminatory or harmful uses.

Find out more
Guide to data linkage, Governing in the Age of AI: Building Britain’s National Data Library; Case study on joining up NHS data with data about socioeconomic determinants of health, Information about using rubbish collection data to gain insights into health needs

What is it?
AI (Artificial Intelligence) is increasingly being used across the NHS to support clinical decision-making, automate administrative processes, and analyse large volumes of data. Recent examples include ambient scribing tools that generate draft clinical notes, and Foresight AI, a tool that predicts health outcomes based on 57 million patient records.

What is the history?
This builds on over a decade of experimentation with AI in healthcare. The recent 10 Year Health Plan placed emphasis on AI as a driver of efficiency and improved experience for both NHS staff and patients.

Benefits

• AI scribes and other administrative tools could help reduce the amount of time clinicians spend typing up notes, easing administrative burden and freeing up more time to spend with patients.
• Technology like AI software to assist with X-ray analysis have been found to be just as accurate or more accurate than doctors analysing scans without technology, leading to improved patient outcomes.
• AI-enabled services for patients integrated in the NHS App could empower patients by helping them articulate their needs and questions better, answering common questions and supporting translation.

Key considerations

• Bias and data quality: AI systems are only as good as the data they’re trained on. If the data is incomplete, outdated, or skewed, the tools can entrench existing health inequalities or deliver inaccurate results, with meta-studies showing an association between AI use and exacerbation of racial disparities.
• Governance and regulation gaps: While regulation is evolving, questions persist about accountability when AI systems make mistakes or deliver poor outcomes. Concerns also exist about the data used to train AI models and who governs this process.
• Public perception and legitimacy: Public opinion about the use of AI in  the NHS is mixed, with specific concerns about ensuring human input and accountability. There is a growing need for public involvement in decisions about where and how these tools are introduced, and transparent communication to maintain trust.

Find out more
AI in healthcare: navigating the noise, public attitudes research about AI in healthcare, NHS AI web page