Recommendations

Problem/opportunity 

The challenges of delivering multi-SDE projects has identified barriers that require a multi-disciplinary approach. 

Recommendation 

Commission a project for multi-SDE working to enable elements of HDRS that facilitate federation across our pre-existing environments including SDE Network, National Pathology Imaging Co-operative (NPIC), and other nations.

Problem/opportunity

Business development, pipeline management and specialised commercial capabilities were consistently identified as the least developed areas across all SDEs. There is limited understanding – both locally and centrally – of how to achieve long-term financial sustainability for the SDE Network and the emerging HDRS. While engagement with users has taken place, there is little evidence of systematic analysis of market needs, demand, or commercial potential. Without this insight, future design and investment decisions risk being misaligned with actual opportunity.

Recommendation

Undertake structured market and customer insight work to inform a clear and evidence-based financial sustainability plan for the SDE Network and emerging HDRS. This should precede and shape the design of an optimised operating model and guide decisions about how best to address current capability gaps in business development and commercial functions across the SDE Network.

Problem/opportunity

The business and operational resilience of SDEs is varied across the board, particularly in relation to how they are resourced, governed, and hosted. Several SDEs are heavily reliant on temporary or contract-based staff, with limited internal capacity for business continuity or succession planning. This fragility risks undermining the long-term stability of critical services, especially where delivery is dependent on a small number of crucial individuals; and reducing ability to build a viable pipeline of high-impact research projects.

Furthermore, hosting arrangements within integrated care boards (ICBs) vary across the SDE Network. Some SDEs benefit from a tightly integrated relationship with their ICB host, while others operate more independently. With the government mandating that ICBs reduce their running costs and the shift toward acting primarily as strategic commissioners, there is a pressing risk that some SDEs may lose hosting or operational support unless their value proposition and sustainability are clearly defined.

This presents an opportunity to proactively assess and strengthen business and operational resilience ensuring that SDEs are not only technically capable but structurally secure and future-proofed within a shifting NHS landscape.

Recommendation

We are recommending that SDEs develop and provide to the Data for R&D Programme team a business plan, including intent for ongoing hosting arrangements and business resilience measures.

Problem/opportunity

The regional network needs to move from 11 independent minimum viable product offerings to a single organisation delivering a competitive service whilst maintaining the strong regional links to data controllers, researchers, industry and patients. Today there are many duplicated processes and services that are not unique to each SDE, and this presents an opportunity to consider shared service model.

Recommendation

There are processes and services that should not be managed by 11 different teams. Shared services should be delivered by teams that have demonstrated that they can successfully deliver that service component and are ready to scale. This would result in some teams being commissioned to run services for multiple SDES particularly focusing on investing in teams, processes and technology that are delivering today so that our investment is as efficient as possible, and the SDE Network operates to the highest standard possible.

Problem/opportunity

Despite some excellent examples of engagement with data providers, data supply into SDEs across regions remains challenging. For many data providers, the current approach is not working, and certain data are not available within SDEs with no clear plan to overcome these issues and agree onboarding.

Many SDEs also described ambitions to be able to link to data held centrally by NHS England (NHSE) and were pursuing applications through Data Access Request Service (DARS) to allow them to do so. However, none had agreement to date, and some described pursuing alternative local data flows directly from providers, who would submit the same data to the SDE at the point of return to NHSE, instead of from NHSE, although without guarantee of the same business rules being applied and therefore the data may not quite match. The exact resource implications of this strategy were unclear but represents clear duplication of effort.

Recommendation

The Programme should provide additional support for this issue at SDE Network level. There are also recommendations (outlined below) that require policy-level engagement and further inform the context for HDRS. Work should be undertaken to examine routes to support the network’s SDEs in their local and national conversations, with board-level engagement on the issues.

Problem/opportunity 

There is an opportunity to converge to a single privacy enhancing technology (PET) solution across the SDE Network.

Recommendation

Work with the NHS PET team to have a harmonised single pseudonymisation approach for all SDEs.

The SDE Network has identified 9 requirements for the NHS PET solution to be used by the SDE Network and will work with the NHS PET team to implement tooling that meets the requirements identified by the SDE Network.

Collaborate with representatives of 4 nations and the Information Commissioner's Office (ICO) to have joint approach for common standards for pseudonymisation to work across the national boundaries for interoperability and safe linkage.

Problem/opportunity

Engagement across the SDE Network with a broad range of stakeholders - including patients and the public, service users, data providers, and other system actors - is highly variable in both approach and maturity. While there are strong examples of formal mechanisms such as advisory groups, lay representation on governance bodies, and strategic partners, wider engagement efforts aimed at informing programme design, policy development, and decision-making are less consistent. 

Where engagement does take place, it is rarely systematic or aligned across the SDE Network. Insights are often not collected, synthesised, or fed into relevant decision-making forums in a timely and transparent way, nor are they routinely shared back with participants. This undermines trust, reduces the influence of engagement on decision-making, and limits opportunities for shared learning and efficient use of resources. This fragmentation may be driven, in part, by a lack of clarity around the key policy questions under development at the national level, making it difficult for local and regional stakeholders to align their engagement efforts or understand where their input can have the most impact.

Recommendation

Establish a strategic insights and impact function, operating at national and local levels, to systematically collect, analyse, and apply insights generated through engagement and involvement activity across the SDE Network. 

This function should be directly guided by a clearly defined and regularly updated set of shared strategic priorities and policy questions, ensuring all engagement activity is aligned, purposeful, and effective. It should work to an integrated workplan, shaped with clear roles and responsibilities at all levels. In addition to improving alignment and use of limited resources, this approach will foster greater collaboration, shared learning, and a stronger sense of collective purpose across the SDE Network.

Problem/opportunity

We heard that, due to the nature of the legal framework under which NHSE SDE operates, the relationship between NHSE Senior Information Risk Owner (SIRO), DARS and NHSE SDE is fundamental for NHSE SDE alignment of data access principles and processes for the SDE Network. NHSE SDE uses existing DARS processes and standards and the NHSE SIRO makes decisions based on advice from the NHSE Advisory Group for Data (AGD). The NHSE AGD performs the role of data access committee for the NHSE SDE. 

The relationship between the Programme and NHSE SIRO/DARS is also important for agreeing use of NHSE datasets within regional SDEs and for ensuring this is done at SDE Network-level where possible. Agreement to sub-licence data via regional SDEs has been impacted by the disparity of regional SDE models which has made a 'one size fits all' approach difficult and required each to make individual cases to NHSE about how data will be shared into SDEs.

Recommendation

Agreement and collaboration between Data for R&D Programme, SDE Network and NHSE SIRO to commit to delivery of an assurance framework that demonstrates equivalence in standards across the SDE Network and DARS.

Agreement between Programme, SDE Network and DARS to align service delivery models.

As per recommendation 5: agree mechanism, funding, and governance arrangements to facilitate linkage and access to NHSE data at programme-level with internal NHSE discussions. Simplify framework, do this once, make available to SDEs and ask them to confirm compliance and audit against requirements across the SDE Network.