Part of Data for Research and Development Programme - Evaluation
Lessons learned and recommendations
Through the interviews and value for money assessment, a series of lessons learned and recommendations have been identified.
These are brought together below and are available in the supporting Excel document. They are categorised as:
- grouped by the relevant area of scope originally defined in 2022
- contain at least one recommendation
- mapped to the Gateway 5 themes
- recommendations are numbered and themed
- an impact and deliverability assessment has been undertaken
This should mean that the lessons learned and recommendations from both reviews can be consolidated.
Objective 1: Provide a network of NHS-owned and managed infrastructure
The interviewees identified that it is essential to maintain momentum, address the stop/start funding and ensure that all secure data environments (SDEs) arrive at comparable service standards, functionality and features to offer researchers a consistent capability and user experience. The challenge of information governance (IG) was mentioned frequently as it is seen as a significant barrier to scaling the services.
| 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) |
| Federation and fragmentation: regional autonomy enabled innovation but created inconsistencies in operating models, processes, governance, data linkage and technical standards. |
Review IG approval processes and consider introducing enabling legislation to accelerate data sharing. (R1.2.1) Develop workforce capability: hiring to substantive posts (assuming there is a move to multi-year funding). (R1.2.2) Define the requirement for a single 'Front Door' for governing the service. Continue to work towards process standards by defining the operating frameworks (to allow appropriate variation and handoffs). Take a user experience-design-led approach to define the consistent service user experience across providers. (R1.2.3) Define data coverage goals and onboarding timelines and track progress to deliver consistent and comprehensive data sets for all regions. (R1.2.4) Establish benefits tracking and reporting from the outset. (R1.2.5) Continue the work on identifying successful operating models and blueprint(s) to establish technical and service standards. These blueprints become the method to assess progress and work towards the reduction of unnecessary diversification for the future. (R1.2.6) Retain the ability to innovate around a core service in response to researcher demand and the introduction of datasets. (R1.2.7) Define clear, consistent service key performance indicators (KPIs) and review no less than annually. (R1.2.8) Define roles and accountabilities for every stakeholder to reduce risks of overlap or gaps (include in scope the national bodies such as to HDR UK, HDRS, NIHR avoid confusion). (R1.2.9) Define federation and its principles (while resisting an over-centralised 'command and control' approach). Establish clear governance with accountabilities, service standards, risk appetite, and reporting enforced. Continue the work to define 'Lead SDEs' or 'Specialised' SDEs that could be aligned to key functions and/or data. Incentivise alignment to common standards. Linked to accountabilities - ensure the roles of the national SDE (NHS England) and regional SDEs are clearly defined to reduce the risk of overlap or gaps developing. (R1.2.10) |
| Communities of practice resulted in improved collaboration, governance alignment, and stakeholder confidence, helping to share knowledge and expertise. | Maintain communities of practice for knowledge sharing, capability building and collaboration. (R1.3.1) |
| Working with researchers has ensured services are fit for purpose. | Continue to engage with the research community to identify the priority datasets that are required. Continue to offer research funding to target research to particular areas of benefit (such as aligned to research agenda/health outcomes) or functionality (NHS DigiTrials) to improve capacity. (R1.4.1) |
| Integration of primary care data, mental health data, community health data: There is limited availability of GP, community and mental health data, which risks diminishing the opportunity for research. | Prioritise integration of additional data sets including primary care, community and mental health datasets. Recognising there are dependencies on securing data sharing agreements with a large number of data controllers and/or changes to legislation. (R1.5.1) |
| Frequently changing reporting requirements consumed significant effort and restricted ability to streamline (automate). |
Implement the performance framework and management information (MI) tooling so that central and regional teams share a single view of activity, cost and performance, reducing duplication and manual reporting. Consult on the requirements (what is feasible and achievable with the data, systems and capability in place today). Ensure a balanced load to deliver insight at a reasonable cost and resource commitment. Consider developing a roadmap to review and update reporting requirements incorporating lessons learned on a regular basis (such as 6 monthly). (R1.6.1) |
| Technical standardisation: Data models and standards were developed, using Observational Medical Outcomes Partnership (OMOP) for example, to enable interoperability across SDEs. ‘Federation’ and/or ‘interoperability’ is only partial. |
Standardise logical architecture, data models and data access processes across SDEs where the foundations are now in operation. Document the patterns (blueprints) that work and share across the Network of SDEs. (R1.7.1) Continue to implement the requirements for federation and interoperability (working with researchers to ensure fitness for research using genomic data and image data where required). (R1.7.2) |
Objective 2: Clinical trials capacity and capability
Clinical trials have lengthy timelines, making early infrastructure planning and ensuring appropriate representation within governance groups essential for major programmes.
| Lesson learned | Recommendation (including reference number) |
|---|---|
| Large recruitment is possible: Recruitment of 1.6 million people to participate in prospective research projects (including trials) has been achieved. |
Offer research funding contingent on using the NHS DigiTrials service. Define clear, consistent 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. Support recruitment via clinical teams as well as direct to potential participants. (R2.1.1) |
| Clinical trials expertise is essential to embed as early as possible | Maintain clinical trials expertise at national level. (R2.2.1) |
| There is no unified search tool across SDEs to identify eligible patient cohorts for feasibility or recruitment. | Develop a national cohort discovery layer - essential for trials but also beneficial to all research. (R2.3.1) |
| Governance complexity and IG delays hindered trial onboarding. | Review the IG and governance pathways to ensure they can support large scale clinical trials with 3rd parties without undue delays incurred in approvals processes. (R2.4.1) |
| Lack of user involvement in trial service design. | Embed academic and commercial user representatives in trial service governance and design. (R2.5.1) |
| Multi‑region trials need consistent governance, data flows, and recruitment processes. | Standardise trial‑related workflows across SDEs. (R2.6.1) |
Objective 3: Genomic datasets
Interviewees offered limited feedback on the achievements delivered in this area of the scope. For completeness, the lessons learned and recommendations received are set out in the table below.
| Lesson learned | Recommendation (including reference number) |
|---|---|
| While there is growing demand from researchers to link SDE data with UK Biobank and Genomics England, it’s difficult to understand what data is available. |
Considering developing a strategic roadmap to provide clarity on genomic and phenotype data coverage and availability. Drive adoption of the service through combination of blueprints, incentives/research grant funding and commercial agreements. Monitor the use and adoption of the service through defined KPI. (R3.1.1) |
| Technical harmonisation: OMOP harmonisation was achieved regionally, but genomic integration lagged. |
Agree scope and requirements for technical and data requirements e.g. link phenotype-genotype data using harmonised standards (OMOP + Global Alliance for Genomics and Health (GA4GH)). Work with relevant researchers to develop appropriate datasets/technical services. Monitor adoption and use of the services with relevant KPIs. (R3.2.1) |
Objective 4: Fair financial returns to the NHS
Commercial frameworks have been designed but it’s recognised that more work needs to be done to establish consistent approaches and a mature service offering to the market of academic and commercial researchers and their organisations.
| Lesson learned | Recommendation (including reference number) |
|---|---|
| Value for money - economy |
Support greater consideration of the needs of the SDE Network being integrated into centrally supported contracts (frameworks and large IT services) with 3rd party suppliers. (R4.1.1) Define the purpose and use of all management information (MI) so SDEs understand why spend and activity data are needed and how they will support improvement. Continue to automate the reporting of MI, increasing transparency and reducing the reporting load. (R4.1.2) Continue and deepen work to increase transparency of regional spend, including more precise requirements in future funding agreements and better systems (such as common customer relationship management (CRM) system/finance management information to track expenditure. (R4.1.3) |
| Value for money - effectiveness |
Increase the levels of commercial capacity across the Network and develop shared capability. Continue work on standardisation of templates and processes, including pricing, to support equality of opportunity and returns for SDEs and speed and consistency in pricing across use cases for customers. (R4.2.1) 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) Continue to reframe programme benefits around what the Programme directly controls (rather than long-run clinical outcomes), such as:
Recognise that outcomes such as improved cancer or dementia care will be realised primarily through research and service partners acting on the findings of research and judge the Programme’s effectiveness on the quality and uptake of the infrastructure and data assets it provides to support this work. (R4.2.4) Work with the Network to develop more detailed financial reporting geared towards demonstrating long sustainability. (R4.2.5) |
| Value for money - efficiency |
Continue to formalise 'Baseline' run and maintain vs 'Transform' funding and manage the latter as discrete, outcome-based projects with clearer milestones and accountabilities. (R4.3.1) Design operating and funding models around a 'central co-ordination plus commissioned local delivery' reality, using performance, support and peer pressure rather than only top-down directives to improve efficiency. (R4.3.2) |
| Value for money - equity |
Design commercial and investment approaches that avoid reinforcing existing advantages, for example by earmarking some funding and support to bring lower maturity regions and data types (such as imaging and genomics) up to a common baseline. (R4.4.1) Keep equity and balance – regional, demographic and by disease area – explicit in future benefits and performance frameworks, including metrics for project distribution, dataset coverage and inclusion of underserved populations. (R4.4.2) |
| Commercial frameworks: revenue generation is emerging, but co-ordination is weak (lack of standardised commercial approach and capability) and dispersed across the Network. |
Introduce shared visibility of commercial opportunities (pipeline) and balance public benefit with commercial interests. Continue to adopt a single commercial framework, pricing models and associated processes, ensuring these are used in all service providers across the Network of SDEs. (R4.5.1) |
| Benefits realisation was premature given significant levels of theoretical potential benefits were assumed to be delivered within the first 3 years when the reality is they will take 10 years to realise. |
Build on the new benefits strategy, linking to actual activities being supported, reviewed and updated on a 6-monthly basis. Consider using categories when tracking benefits (Created, Enabled, Influenced) to reduce the risk of double-counting benefits and reflect the Programme's role. If needed, update the Theory of Change approach to reflect multistage approach to delivery for enabled and influenced benefits. (R4.6.1) |
| Benefits realisation: original benefits were overstated and remain backloaded. | Define and communicate clear principles for balancing public benefit with commercial returns. (R4.7.1) |
| 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) |
Objective 5: Patient and public support
Interviewees noted the significant effort was invested in patient and public engagement. This has been successful in improving the public’s understanding of why access to healthcare data is necessary for the future. As with other aspects of the Programme, the recommendations below highlight the ongoing need to engage with the public. It is suggested that public representatives should be included at all layers of the governance structures. There are also recommendations to standardise PPIE practices and expand outreach and inclusion, so England’s diverse population is represented fairly across this programme.
| Lesson learned | Recommendation (including reference number) |
|---|---|
| Strong engagement success: public engagement was a standout achievement with thousands of participants involved in deliberations and governance roles. | Maintain 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) |
| Trust and transparency are critical for public confidence in data sharing. High public trust achieved through transparency and inclusion. | Ensure clear communication about data use and governance safeguards; keep NHS involvement visible. (R5.2.1) |
| Diverse representation: need to scale engagement among diverse communities. | Expand outreach and inclusion strategies to ensure underrepresented groups are represented. (R5.3.1) |
| Short-term funding cycles undermined continuity of engagement efforts. | Secure stable funding and long-term planning for PPIE activities to sustain momentum. (R5.4.1) |
| The commitment to PPIE is a core continuing element of the Programme. Representation in governance structures is essential for legitimacy and accountability. | Ensure the lessons learned from the Programme’s approach to PPIE are fully captured in the evaluation of the Programme and communicated to the DHSC-led HDRS set up team, and more widely. (R5.5.1) |
| Consistency in practices: engagement varied across regions. |
Clarify roles and responsibilities of all PPIE groups across the Network. Foster collaboration between national and regional teams, sharing best practice to ensure a consistent approach, messaging so as to amplify the work. (R5.6.1) Develop a national framework to standardise PPIE practices while allowing local flexibility, so all SDEs can engage their communities effectively and consistently. Communicate clearly about data use and governance safeguards; keep NHS involvement visible. (R5.6.2) |
| There is inconsistent documentation and sharing of insights from PPIE activity across the Network, resulting in valuable learning being lost, uneven transparency, and limited ability for SDEs and national teams to build on one another’s engagement work. | Ensure that insights and learning from PPIE activity is written up and, wherever possible, published for transparency. (R5.7.1) |
Programme delivery and Gateway 5 review
The Data for R&D Programme is anticipated to move from programme management controls to be delivered as an ongoing service led through a newly formed government-owned company (GovCo), the Health Data Research Service. It is appropriate to review the current governance and controls to ensure they are fit for purpose. Many interviewees commented that the roles and accountabilities for all stakeholder groups need to be reviewed to ensure there is no overlap or confusion. Future governance should clarify accountability between central and regional teams to avoid ambiguity.
The Gateway 5 review has identified that programme governance and reporting has improved over the course of the Programme. It is difficult with a national programme enabled by regional teams to strike the right balance. But there needs to be accountability for programme delivery between the central team and their delivery partners: for both delivery and benefits realisation.
Last edited: 8 May 2026 11:48 am