GPs, Patients and Health Data Commercialisation in England

Abstract

The advent of Artificial Intelligence (AI) and, more specifically machine learning, brings great opportunities for healthcare. But linked with this there are unresolved issues about the safeguarding of patients’ personal (including health) data as the frameworks for their use appear to allow for their sale by or transfer from the National Health Service (NHS) to commercial organizations. The trust that most patients hold in the NHS may, as a consequence, be undermined and lead many of them to ‘opt out’ of (or choose not to ‘opt in’ to) the systems for data collection and sharing that are being configured in England by the UK government. For those AI suppliers and service providers that are seeking patients’ health data, challenges may as a consequence of ‘opt outs’ arise because of the potential inadequacy (limited size or representativeness) of the datasets that would otherwise be available. For the patients in question, there are concerns that include the ownership, privacy and confidentiality of their data, together with the seeming shortcomings of NHS and government plans for a framework that would facilitate data sharing in ways that recognize their particular circumstances and the different levels of confidentiality that might apply. There is, at the same time, some evidence of patient trust in public health services being conditional on their data being in the firm control of the NHS-with strong resistance to data being used for financial gain by commercial organizations. This brief communication offers a preliminary examination of the issues from the point of view of patients and their General Practitioners (GPs) in England. And in light of limitations of the UK Government’s June 2022 Policy Paper ‘Data Saves Lives: Reshaping Health and Social Care with Data’, it calls for the urgent development and adoption of mandatory regulatory frameworks that will (a) cement the role of GPs’ as guardians of patient data; and (b) provide appropriate safeguards for patients.