Background Care.data was a programme of work led by NHS England for the extraction of patient-identifiable and coded information from general practitioner (GP) records for secondary uses. This study analyses the forms (on the websites of GP practices) which enabled patients to opt out.
Methods Theoretical 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.
Results One 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.
Conclusions Numbers of patients (not) 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.
- Informed Consent
- Primary Care
Statistics from Altmetric.com
If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.
Twitter Follow Paraskevas Vezyridis at @paravezy
Contributors PV designed the study, collected, analysed and interpreted the data, and drafted the manuscript. ST participated in its design, interpreted the data and drafted the manuscript. All authors read and approved the final manuscript.
Funding PV is supported by a Marie Skłodowska-Curie Individual Fellowship from European Commission (2014-IF-659478). ST is partially supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care [East Midlands]. The views expressed are those of the authors and not necessarily those of the EC, NHS, the NIHR or the Department of Health.
Competing interests None declared.
Provenance and peer review Not commissioned; externally peer reviewed.
Read the full text or download the PDF:
Other content recommended for you
- The NHS’s care.data scheme: what are the risks to privacy?
- Defining adolescent common mental disorders using electronic primary care data: a comparison with outcomes measured using the CIS-R
- Media content analysis of general practitioners’ reactions to care.data expressed in the media: what lessons can be learned for future NHS data-sharing initiatives?
- Public opinion on sharing data from health services for clinical and research purposes without explicit consent: an anonymous online survey in the UK
- Adoption and non-adoption of a shared electronic summary record in England: a mixed-method case study
- Identification and management of frail patients in English primary care: an analysis of the General Medical Services 2018/2019 contract dataset
- Cohort profile of the South London and Maudsley NHS Foundation Trust Biomedical Research Centre (SLaM BRC) Case Register: current status and recent enhancement of an Electronic Mental Health Record-derived data resource
- Data privacy: GP surgery withdraws from kidney screening pilot after patients voice concerns
- Opt-out rates and reasons for non-participation in a single-arm feasibility trial (ENGAGE) of a guided internet-administered CBT-based intervention for parents of children treated for cancer: a nested cross-sectional survey
- The social licence for research: why care.data ran into trouble