TO BE PUBLISHED July 2025
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This conference will examine next steps for the development and use of patient data in England.
The agenda will bring out latest thinking, best practice and key issues for establishing a single patient record and expanding access for research, as well as practical considerations for NHS trusts and integrated care boards in adopting and integrating new platforms.
Supporting access to patient data
It will be an opportunity for key stakeholders and policymakers to discuss implications of recent policy announcements, including the launch of the new Health Data Research Service, a joint initiative between the Government and the Wellcome Trust, aimed at establishing a secure national access point for health data, and supporting R&D across the life sciences sector.
Delegates will also discuss implications of the ambition to move forward with the Federated Data Platform, following ministerial calls for all NHS trusts to adopt the system by 2026, alongside proposals in the Data (Use and Access) Bill aiming to boost the secure use of data.
Utilisation and clinical research
Sessions will consider priorities for the effective use of large-scale datasets to improve clinical research and population health strategies, and for translating findings into benefits for frontline care. Delegates will consider the role of the new Health Data Research Service in addressing longstanding concerns around duplication, data silos and excessive bureaucracy to speed-up research and foster collaboration.
Key considerations for delivering a single patient record will be examined, looking at the way forward for consolidating fragmented records under patient passports and the NHS App to improve care pathways and patient safety.
Legal and governance issues
Further sessions will explore concerns around the lawful basis for the processing of personal confidential data under the Federated Data Platform and potential implications of the National Data Opt-Out regime. Practical and ethical questions arising from the rollout of the FDP will discussed, including compatibility with existing local systems, implications for the workforce, and concerns around transparency and the use of proprietary technologies.
Attendees will discuss governance and responsibilities associated with data use going forward - taking into account the planned consolidation of NHS England’s functions within the Department of Health and Social Care - with a focus on options for maintaining public trust through transparency, oversight and patient control mechanisms.
Driving patient understanding and inclusivity
Concerns around inclusion and equitable access will also be discussed, considering strategies to improve accessibility for groups at risk of digital exclusion. Discussion is expected on how rollout of systems such as the NHS App can best support all patients to understand and manage their own care.
Digital infrastructure
The conference will also bring out stakeholder perspectives on commercial partnerships and the role of private sector platforms in health data infrastructure, including issues around accountability, procurement, and standards for public benefit from research access and innovation.
Overall areas for discussion include:
- policy: Data (Use and Access) Bill implementation - implications for lawful health data processing - legal clarity on use of personal confidential data - expanded opt-out provisions
- strategy: FDP rollout - adoption across NHS trusts and ICBs - interoperability with existing systems locally - technical capacity and system readiness issues - procurement transparency and oversight
- data: options for assigning data controllership - clarity on roles amid structural changes to NHS England - implications for governance and legal direction - patient rights and clarity on data use
- public trust: transparency and accountability in health data partnerships - addressing concerns over commercial influence and proprietary technology - patient confidence in data-sharing initiatives
- access: mitigating risks of exclusion in wider NHS App usage - healthcare communication - service delivery standards - equitable benefit from digital health reform
- tech implementation:
- compatibility and interoperability with local legacy systems - managing transition from bespoke local tools to centralised platforms
- FDP integration with widely-used analytical tools such as Power BI and Tableau - staff support and training, and priorities for retention of core skills
- R&I: secure access to large datasets for public health and clinical research - supporting faster trials and improved evidence to support care - meeting researcher needs
- GP data:
- clarity on the use of patient information from general practice within local FDP systems - implications for legal compliance and public confidence
- ensuring data-sharing agreements are in place, understood and adhered to - improving public messaging on how data is handled
- ethical frameworks: supporting innovation alongside privacy and consent - safeguards in patient passport proposals - algorithm-driven decision-making - oversight of AI use in healthcare
- long-term priorities:
- strategies for record consolidation - planning and developing best practice for moving to a single patient record
- streamlining data capture across care settings - coordination with 10-year digital strategy goals - putting in place infrastructure fit for the long-term and designed with the user in mind
All delegates will be able to contribute to the output of the conference, which will be shared with parliamentary, ministerial, departmental and regulatory offices, and more widely. This includes the full proceedings and additional articles submitted by delegates. As well as key stakeholders, those due to attend include officials from DSIT; DHSC; DBT; DWP; MHCLG; MHRA; UKHSA; DoH, ROI; MOJ; HSE; ICO; HMPPS; the Welsh Government; and The Scottish Government.
