Morning, Thursday, 3rd September 2026
Online
This conference will examine next steps for the use of patient data in the UK. It will bring together stakeholders and policymakers to discuss priorities for development of the Health Data Research Service, approaches to data access and linkage, data security, and options for strengthening governance, public trust and system coordination.
The agenda will assess approaches to progressing towards a more connected data infrastructure that can optimally support research use, including priorities for strengthening data collection, linkage, and quality across primary care, hospital, medicines, and mortality datasets. Priorities for accountability will be considered, alongside ways forward for maintaining trust - particularly with underserved communities including groups with lower engagement, more limited access to services, or historically lower levels of trust - alongside what will be needed to deliver and communicate demonstrable benefits to patients and the public.
Transparency, patient safety & data security
Areas for discussion include improving transparency around who can access patient data, how it is used, and how patient interests are safeguarded, alongside the role of patient partnerships in shaping system design and delivery.
Concerns around safety and security are expected to be a key focus, particularly in light of the UK Biobank health data breach, which has heightened scrutiny around how large-scale health datasets are protected and governed. The conference will be an opportunity to examine whether current security frameworks are sufficiently robust in the face of evolving cyber threats, and what additional safeguards may be required to prevent misuse or unauthorised access. Consideration will also be given to how organisations can better balance openness for research with the need for stringent operational security.
Delegates will assess approaches to ensuring robust de-identification, secure data environments, and clear governance frameworks that maintain public trust while enabling appropriate access. Key considerations for development robust consent processes for secondary uses of data will also be considered.
Data access, usage & integration
As well as looking at security and data stewardship, the agenda will consider how barriers to data access can be reduced - particularly in relation to linking primary and secondary care data - and how a more consistent UK-wide approach might be developed, taking into account differences in opt-out models across the devolved administrations.
Frameworks for better supporting SMEs and innovators in the UK to access health data responsibly will be discussed, as well as how data assets can be effectively leveraged to strengthen clinical trials, accelerate discovery, and support the safe development of AI.
Sessions will also examine opportunities to better link NHS data with wider public sector datasets to understand the social determinants of health, as well as to enhance pharmacovigilance and real-time surveillance capabilities. Delegates will consider latest thinking on addressing longstanding challenges in data linkage, including gaps between major research resources and routine NHS datasets, and priorities for ensuring that infrastructure supports both equitable access and high-quality evidence generation.
Ways forward for tackling regional variability in data quality and completeness will also be considered, alongside priorities for creating more joined-up data infrastructure to support 10 Year Health Plan aims to shift toward a more preventative model of care and tackle persistent inequalities.
HDRS coordination, governance & regulation
Immediate questions around how the HDRS will interact with and build on existing secure data environments will be explored, including how to avoid unnecessary duplication - including through greater coordination and shared infrastructure. Delegates will assess models for access to data and analytical tools, looking at what constitutes fair value, the balance between academic, charitable, and commercial use, and implications of emerging approaches to pricing and value-sharing. Priorities for ensuring that commercial benefit is assessed transparently will be discussed, alongside clarity around funding and charging arrangements.
Key considerations for ensuring long‑term funding and a sustainable operating model for the HDRS will also be examined, ensuring instilling clarity on how core infrastructure, maintenance and future upgrades will be resourced over time so that the service remains stable, trusted and fit for purpose.
Further sessions will examine governance and accountability, including how success for the HDRS should be defined and measured, and how benefits can be demonstrably returned to the NHS patients and the public. Discussion will also consider the way forward for developing clarity and proportionality in regulatory frameworks to support innovation while maintaining high standards of privacy and security, and supporting the UK in remaining an attractive and trusted environment for data-driven research and life sciences investment.
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 already due to attend include officials from the Department of Health and Social Care; Department for Science, Innovation and Technology; Health and Safety Executive; HM Prison and Probation Service; HM Treasury; Medicines and Healthcare Products Regulatory Agency; Ministry for Housing, Communities and Local Government; Office for Life Sciences; UK Health Security Agency; the Welsh Government; and The Scottish Government.
