Patient data-sharing for immigration enforcement: a qualitative study of healthcare providers in England

AIM: To explore healthcare providers’ perceptions and experiences of the implications of a patient data-sharing agreement between National Health Service (NHS) Digital and the Home Office on access to NHS services and quality of care received by migrant patients in England. DESIGN: A qualitative study using semi-structured interviews, thematic analysis and constant-comparison approach. PARTICIPANTS: Eleven healthcare providers and one non-clinical volunteer working in community or hospital-based settings who had experience of migrants accessing NHS England services. Interviews were carried out in 2018. SETTING: England. RESULTS: Awareness and understanding of the patient data-sharing agreement varied among participants, who associated this with a perceived lack of transparency by the government. Participants provided insight into how they thought the data-sharing agreement was negatively influencing migrants’ health-seeking behaviour, their relationship with clinicians and the safety and quality of their care. They referred to the policy as a challenge to their core ethical principles, explicitly patient confidentiality and trust, which varied depending on their clinical specialty. CONCLUSIONS: A perceived lack of transparency during the policy development process can result in suspicion or mistrust towards government among the health workforce, patients and public, which is underpinned by a notion of power or control. The patient data-sharing agreement was considered a threat to some of the core principles of the NHS and its implementation as adversely affecting healthcare access and patient safety. Future policy development should involve a range of stakeholders including civil society, healthcare professionals and ethicists, and include more meaningful assessments of the impact on healthcare and public health.