The National Data Guardian (NDG) for Health and Social Care has issued a statement directly addressing public concerns regarding patient data access within the NHS Federated Data Platform (FDP) and the National Data Integration and Transformation (NDIT) environment. This intervention comes in response to the 'Not With My NHS Data' campaign, which has vocally raised questions about the involvement of external contractors and the potential implications for patient privacy.
The FDP, a new digital infrastructure, is designed to help the NHS better coordinate care, manage waiting lists, and allocate resources more efficiently by integrating existing data sources. However, the campaign expressed apprehension that the platform could lead to patient data, often sensitive medical records, being accessed inappropriately by third-party organisations involved in the platform's development and operation.
In her statement, the NDG, Dr Nicola Byrne, reiterated the robust legal and ethical frameworks that govern the use of patient data within the NHS. She emphasised that the FDP does not introduce new methods of collecting patient data, nor does it alter the existing rules around how data can be shared. Instead, it acts as a tool to bring together information already held by the NHS, making it more accessible to authorised NHS staff for legitimate healthcare purposes.
The statement also highlighted that any access to patient data by external contractors supporting the FDP would be strictly controlled, limited to what is necessary for their specific contractual obligations, and subject to the same stringent legal and ethical safeguards as NHS staff. These contractors are bound by confidentiality clauses and data protection legislation, including the UK General Data Protection Regulation (GDPR) and the Data Protection Act 2018.
Furthermore, the NDG reaffirmed patients' existing rights to control how their data is used. This includes the ability to exercise the National Data Opt-Out, which allows individuals to prevent their confidential patient information from being used for research and planning purposes. It is important for patients to understand the distinction between data used for individual care and data used for broader planning and research, with different opt-out mechanisms applying.
The NHS has consistently stated that the FDP is crucial for modernising healthcare delivery and improving patient outcomes. The platform aims to provide a more holistic view of patient journeys, enabling better-informed decisions and more personalised care. The NDG's statement seeks to provide reassurance that these benefits will not come at the expense of patient privacy, stressing the ongoing commitment to transparency and accountability in data handling.
Source: National Data Guardian for Health and Social Care