The analysis of data from electronic health records aspires to facilitate healthcare efficiencies and biomedical innovation. There are also ethical, legal and social implications from the handling of sensitive patient information. The paper explores the concerns, expectations and implications of the National Health Service England care.data programme: a national data sharing initiative of linked electronic health records for healthcare and other research purposes. Using Nissenbaum’s contextual integrity of privacy framework through a critical Science and Technology Studies lens, it examines the (...) way technologies and policies are developed to promote sustainability, governance and economic growth as the de facto social values, while reducing privacy to an individualistic preference. The state, acting as a new, central data broker reappropriates public ownership rights and establishes those information flows and transmission principles that facilitate the assetisation of NHS datasets for the knowledge economy. Various actors and processes from other contexts attempt to erode the public healthcare sector and privilege new information recipients. However, such data sharing initiatives in healthcare will be resisted if we continue to focus only on the monetary and scientific values of these datasets and keep ignoring their equally important social and ethical values. (shrink)

BackgroundCare.data was a programme of work led by NHS England for the extraction of patient-identifiable and coded information from general practitioner records for secondary uses. This study analyses the forms which enabled patients to opt out.MethodsTheoretical sampling and summative content analysis were used to collect and analyse dissent forms used by patients to opt out from care.data. Domains included basic information about the programme, types of objections and personal details required for identification purposes.ResultsOne hundred opt-out forms were analysed. Fifty-four forms (...) mentioned that this programme was run by NHS England. 81 forms provided two types of objections to data-sharing, and 15 provided only one objection. Only 26 forms mentioned that direct care would not be affected and 32 that patients maintain their right to opt back anytime. All but one of the opt-out forms we reviewed requested the name of the person wishing to opt out. 94 required a date of birth and 33 an NHS number. 82 required an address, 42 a telephone number and 7 an email address.ConclusionsNumbers of patients opting out should be treated with caution, because the variability of information provided and the varied options for dissent may have caused confusion among patients. To ensure that dissent is in accordance with individual preferences and moral values, we recommend that well-designed information material and standardised opt-out forms be developed for such data-sharing initiatives. (shrink)

The development of electronic personal health records by independent vendors and national health systems is understood to empower patients and create a new kind of consumerism in healthcare. With more personal health information at hand, active participation in the management of health and rational purchasing of healthcare services will be possible. Healthcare systems will also be able to contain costs and achieve sustainability. Based on a careful examination of the literature, we argue that many of the declared benefits of this (...) technology are rather unattainable. As the boundaries between the public and private healthcare sectors become blurred and as employers struggle to reduce health insurance expenses, this proclaimed ‘consumer empowerment in healthcare’ is an attempt to introduce a technology and a business model for centralising all relevant PHI to render them economic. We reflect on the consequences for the ‘empowered’ user and we suggest that this new market device has to separate and individually address sufficiently issues of privacy, confidentiality and security before it can claim a place in the digital healthcare ecosystem. (shrink)