Information-sharing behaviours in English General Practitioners: when is it justifiable to share healthcare information? A conceptual and empirical study

This project was initiated in the context of debate about how far routinely-collected patient information should be shared, both to support direct-care and for “secondary uses” such as research and the protection of public health. The overall research aims were to: ● Describe and analyse the principles for the sharing of information that policy-makers and professional bodies say are appropriate for General Practitioners (GPs) to use. ● Describe and analyse the reasons given by GPs to justify the decisions about information-sharing they make. ● Compare and synthesise the principles and justifications, exploring any differences between policy and practice. ● Suggest how these may be better aligned, to provide more consistent and robust justifications for information-sharing. This research project took a novel approach in order to address these aims, following an Empirical Ethics approach. Relevant Normative Texts were identified and analysed. GPs were interviewed to provide insight into the justifications they use for information-sharing in practice. The Normative-Empirical Reflective Equilibrium (NE-RE) method was used to attempt to find a balance between the principles and the justifications used in practice. The analysis revealed that GPs and authors of the Normative Texts were approaching the question from different directions. There was general agreement that principles relating to confidentiality, privacy, data protection, consent, patient choice and trust were important. However, there were significant differences in the ways these were defined and used. Additionally, the GPs valued other factors (such as the need to meet acute clinical needs) over the principles used in the Normative Texts, and were also significantly influenced by contextual and human factors. This was not appropriately acknowledged in the Normative Texts. The research proposes that a new model for the normative guidance for information-sharing is needed, one that more openly considers the interplay between the information, the purpose for which it might be shared, patient expe