Data for Research and Development Programme - Evaluation
This report has been prepared by Starlight Digital Services Ltd ('Starlight’) solely for the purpose of providing an independent evaluation of the Data for Research and Development Programme (the 'Programme'). The evaluation has been conducted in accordance with the agreed scope and timeframe.
The findings, conclusions, and recommendations set out in this report are based exclusively on information made available to the review team during the engagement. This information comprised documentation supplied by the Programme and interviews with stakeholders identified by the Programme’s senior responsible owner (SRO). The review took place in December 2025 and January 2026. Starlight has not independently verified the accuracy, completeness, or reliability of the information provided and has relied upon it in good faith.
The analysis and judgements expressed in this report reflect the circumstances and evidence available at the time of the review. They should not be interpreted as providing assurance over future performance, outcomes, or value for money, nor as a comprehensive assessment of all risks, controls, or governance arrangements relating to the Programme.
This report is not intended to be, and should not be relied upon as, legal, financial, or accounting advice. Except as required by law, Starlight accepts no responsibility or liability to any party other than the commissioning body in respect of the contents of this report or any actions taken in reliance upon it.
Executive summary
The NHS England Data for Research and Development Programme (Data for R&D Programme) was established following the COVID-19 pandemic to make real-world healthcare data available to researchers on an unprecedented scale. There is widespread recognition that data systems must support both direct care and research to create learning health systems. This was and is seen as fundamental to the delivery of good health and care. It is not optional.
This independent evaluation was commissioned by NHS England’s Data for R&D Programme and delivered by Starlight. The task was to interview a wide range of stakeholders to identify lessons learned, suggest recommendations for the future and assess the value for money of the Programme. The evaluation focused on interviewing key stakeholders from across researchers who use the services, policymakers, programme teams and service delivery teams. The evaluation also reviewed key documents.
The vision for the Programme is:
“By 2025, our vision is to have a world-leading NHS-wide health data research infrastructure that enhances patient care, sustains the NHS, and supports innovation, while benefiting the economy through attracting life sciences to work in the UK.”
There have been previous attempts to make healthcare data available for research, but nothing on the scale set out in 2022.
The Programme has achieved many foundational successes, including:
- establishing a network of 11 regional secure data environments (SDEs)
- a national SDE
- NHS DigiTrials
The Programme engaged with the public from the outset. New datasets which have not previously been easily accessible for research, such as pathology data, have been onboarded. The NHS DigiTrials service has registered over 1.6 million consented participants. A total of 545 research projects are supported (as of December 2025). There are standard processes and commercial approaches shared across the NHS Research SDE Network ('the Network') and commercial contracts in place to provide services to life sciences companies.
These achievements have been delivered during a period of significant political change with 4 UK governments and 6 changes to the Secretary of State for Health and Social Care. Funding delays necessitated the use of short-term staff, such as contractors, which poses a risk to institutional memory and capability development.
This document includes an evaluation of the Programme achievements, value for money and lessons learned. The table below summarises the key lessons and provides a cross-reference to the complete recommendations.
| Lesson learned | Recommendation (including reference number) |
|---|---|
| Funding uncertainty delayed progress and undermined planning. | Move to multi-year funding cycles to support long-term planning and sustainability. (R1.1.1) |
| Information governance is complex and subject to interpretation across many data controllers (recognising there is a data controller for each care provider in England). This risks delays in negotiating data sharing agreements which could cause ongoing delays in the ability to scale the services. | Review information governance approval processes and/or introduce enabling legislation to accelerate data sharing. (R1.2.1) |
| Large recruitment is possible: recruitment of 1.6 million patients to participate in trials has been achieved. |
Consider incentivising research projects contingent on using the services established. Define clear, consistent key performance indicators (KPIs) that drive use and adoption of the NHS DigiTrials service. Harmonise canonical data models to maximise screening, randomisation, feasibility, recruitment, follow-up and return on investment (R2.1.1). |
| Benefits were originally far-reaching and linked to subsequent activity such as research findings. Work has been done recently to review, revise and update the benefits strategy and framework. | Support the new benefits framework, with measurable, attributable statements, standard templates and a dedicated benefits network to support SDEs and central teams. (R4.2.2) |
| Be mindful of the tension between public benefit and commercial interests. | Establish the strategy for managing the commercials and benefits - ensuring a truly balanced approach (R4.8.1). |
| Strong engagement success: public engagement was a standout achievement with thousands of participants involved in deliberations and governance roles. |
Maintain patient and public involvement and engagement (PPIE) as a core principle in all future programmes and embed PPIE across governance levels. Include patient/public representatives in programme, regional, and project governance structures. (R5.1.1) Expand outreach and inclusion strategies to ensure underrepresented groups are represented (R5.3.1) |
Reference numbers refer to chapter 6: lessons learned and recommendations.
Despite the challenges faced by the Programme, individuals interviewed remain committed to the ongoing success and the potential for even greater impact in the future. They are inspired to play their part in identifying new discoveries, treatments, and practices to improve healthcare and health outcomes for people in the United Kingdom.
Last edited: 29 May 2026 11:30 am