June 2024
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This conference discussed next steps for patient records in the NHS and the use of patient data in England.
It was an opportunity for stakeholders and policymakers to discuss priorities for the rollout of the Federated Data Platform, introduced by NHS England last year aiming to support health and care organisations utilise data and work together to understand patterns, solve problems and plan services for their local population.
Delegates assessed how to incorporate lessons learnt from pilot case studies, and next steps for building public trust and awareness, with concerns over transparency in data, including the future of data-sharing in light of the NHS partnership with private industry to support delivery of the platform.
The agenda looked at linked issues around data protection and security, and latest thinking on addressing challenges around anonymisation and accessibility of data, as well as priorities for partnership-working and the role of new approaches to data in enabling innovative healthcare solutions and collaborative working.
With the Spring Budget announcing plans for improving NHS productivity through electronic patient records and updated IT systems, the conference discussed the future of data management, looking at priorities for trust and transparency, delivering effective integrated data, and tackling challenges at NHS trust level, including digital maturity.
The agenda looked at the impact of inclusion of GP records on the NHS App, and the future of patient involvement with their healthcare, including how to increase public understanding of their records, as well as priorities for protecting and supporting vulnerable groups. Delegates also discussed implications for efficiencies for GP surgeries and access to results.
Clinical research was a key focus in the agenda, examining initiatives aimed at improving the accessibility of patient data to support innovation, development of new medicines, and advances in treatment. We also expected discussion on strategies for improving diversity and inclusion relating to sources of health data.
Following the Goldacre review, further sessions looked at the development of Secure Data Environments, with discussion on next steps for digital infrastructure to make best use of data-driven research.
We are pleased to have been able to include keynote sessions with: Louise Greenrod, Deputy Director, Data Policy, Department of Health and Social Care; Dr Nicola Byrne, National Data Guardian; and Professor Ben Goldacre, Director, The DataLab, Nuffield Department of Primary Care Health Sciences, University of Oxford.
Sessions in the agenda included:
- priorities for the Data Guardian: trust and transparency in data use across the NHS
- public confidence: data sharing and the relationship between healthcare professionals and patients
- the Federated Data Platform:
- next steps for development and rollout - data management and integration - the role of the private sector - delivering effective nationally-integrated data
- learning from the pilots - addressing key issues at NHS trust level - tackling variation in levels of digital maturity
- the NHS App: examining impact so far of record-sharing on patient engagement with their healthcare and GP efficiency
- data for research:
- improving availability and impact on innovative healthcare solutions and health outcomes - priorities for partnership working - improving diversity and inclusion in sourcing health data
- secure Data Environments - data protection and security - privacy and transparency - building public trust in data research use
- policy: the future for patient records in the NHS and the use of patient data in England
The conference was an opportunity for stakeholders to consider the issues alongside key policy officials who attended from DHSC; MHRA; UKHSA; OLS; DSIT; DBT; ICO; NAO; HMPPS; GLD; DWP; UKSA; Defra; DLUHC; DoH, ROI; HMRC; The Scottish Government; and the Welsh Government.
