“Prepared to Share?”: Patient data sharing in complex conditions and at the end of life

East of EnglandGeneric Health Relevance
Start Date: 8 Jan 2013

Project overview

The “Prepared to Share?” study is about sharing patient data across healthcare settings and professional boundaries, in the contexts of complex conditions, advanced and progressive disease, and /or at the end of life. While the majority of patients and the public believe that we have a unified NHS record or that patient data sharing works as effectively as online banking or social media, this is not the case. Each healthcare setting has electronic or paper records of its own. IT systems of different organisations generally do not communicate. There are significant legal and ethical challenges associated with patient data sharing.

The study aims to evaluate the set-up, progress and impact of the Cambridgeshire & Peterborough Project on Data Sharing in End of Life Care, while contextualising it in broader research on data sharing, Electronic Palliative Care Coordination Systems (EPaCCS) and implementation of health information technology (HIT).

Dr Stephen Barclay