NEWS: NHS Plans Unified Patient Data Platform

NHS England will consult on controversial plans to consolidate patient data from England’s clinical registries in a single platform, following opposition from patient groups.

In 2022, NHSE announced that it would combine more than 37 clinical registries in a single unified registry solution called the NHS England Outcome Registries Platform (ORP).

Clinical registries, which are often set up by individual clinicians, are designed to understand specific medical conditions or groups of patients.

The ORP was created to collect details of the implantation of medical devices to measure patient outcomes, following recommendations in the Independent Medicine and Medical Device Safety Review (2020).

Seven clinical registries were planned to be included in the ORP from summer 2024, following the addition of the major trauma, breast implant, and the cochlear implants registries in March 2024.

However NHSE faced objections from patient groups and the Federation of Clinical Registries (FCR), about its failure to engage or consult with clinical registry providers and other stakeholders.

Patient groups, including the Haemophilia Society and Anthony Nolan, also expressed opposition to the National Haemophilia Database (NHD) being subsumed by the ORP.

In response to concerns, NHSE has set up an expert reference group, including clinical registry providers and patient groups, led by Stella Vig, NHS national medical director for secondary care and quality.

Vig said that NHSE is “working with stakeholders to develop a new strategy for clinical audits and registries, which will direct future work on clinical audit, quality improvement and patient safety to bring further benefits to patients”.

The group will develop a draft National Clinical Audits and Registries strategy, to be consulted on in 2025.