Patient groups oppose NHSE plans for unified clinical registry platform

Patient groups advocating for individuals with blood disorders have voiced their concerns regarding NHS England’s proposed consolidation of the country’s clinical registries into a single platform. With more than 100 existing clinical registries in England, the decision to merge over 37 of them into the NHS England Outcome Registries Platform (ORP) has raised red flags for organizations such as the Haemophilia Society and Anthony Nolan. These patient groups have highlighted the lack of transparency and consultation in the process, emphasizing the need for thorough discussions with stakeholders to ensure that the platform effectively meets the diverse clinical needs. In a joint letter to Professor Stephen Powis, national medical director for NHSE, concerns about patient safety and data protection were addressed, particularly in relation to the proposed inclusion of the National Haemophilia Database (NHD) in the ORP. The Federation of Clinical Registries (FCR) has also expressed reservations about the platform’s security vulnerabilities, citing concerns about its accessibility and potential cyber risks. While NHSE has emphasized its commitment to meeting high standards of cybersecurity and data protection, patient groups and clinical registry providers continue to urge for greater consultation and clarity on the implications of the ORP. As discussions and debates surrounding the future of the ORP unfold, stakeholders will be closely monitoring developments to ensure the best interests of patients and healthcare providers are safeguarded.