Morning, Thursday, 3rd September 2026
Online
This conference will examine next steps for the use of patient data in the UK, including development of the Health Data Research Service and its role in transforming both service delivery and research.
The planned agenda will assess approaches to progressing towards aims for a more connected and research-ready data ecosystem, including priorities for strengthening data collection, linkage, and quality across primary care, hospital, medicines, and mortality datasets.
Transparency, access & usage
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. Delegates will consider approaches to ensuring robust de-identification, secure data environments, and clear governance frameworks that maintain public trust while enabling appropriate access.
It will be an opportunity for policymakers, researchers, and system leaders to 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.
Approaches to better supporting SMEs and innovators in the UK to access health data responsibly will be discussed, as well as how data assets can be 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 explore how longstanding challenges in data linkage could be addressed, 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.
Coordination, governance & regulation
Questions around how the HDRS will interact with and build on existing secure data environments will be considered, and 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 the balance between academic, charitable, and commercial use, and implications of emerging approaches to pricing and value-sharing.
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 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 support the UK in remaining an attractive and trusted environment for data-driven research and life sciences investment.
Overview of areas for discussion
- national data infrastructure and research-ready access:
- priorities for delivering the HDRS as a single, secure national gateway for approved research access
- improving linkage across primary care, hospital, medicines, mortality, and wider public sector datasets
- achieving coordination across secure data environments and existing infrastructure - avoiding duplication and supporting long-term sustainability
- data access, use, and innovation:
- reducing barriers to accessing linked datasets - approaches to simplifying approvals for researchers and innovators
- supporting safe, ethical use of data for clinical trials, AI development, real-time surveillance, and system planning
- developing sustainable access models - support for SMEs - the mix of academic, charitable, and commercial use
- patient trust, transparency, and public value:
- strengthening transparency on data access, use, and safeguards - clear accountability and audit mechanisms
- patient and public involvement - equitable access to benefits
- standards, interoperability, and data quality:
- implementing consistent information standards - supporting interoperability across care and research
- improving data quality and accuracy - addressing gaps in dataset linkage, including between routine NHS data and major research resources
- governance, commercial models, and system accountability:
- establishing clear, proportionate governance frameworks for HDRS and the wider data ecosystem
- examining commercial access, pricing, and value-sharing, and implications for public trust
- defining success measures, including impact on research, innovation, and patient outcomes
