| Title: | “Prepared to Share?”: Patient data sharing in complex conditions and at the end of life |
| Project Description: | 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.
Our 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). |
| Project organisation | |
| Start date: | 8th January 2013 |
| End date: | 28th February 2018 |
| Contact person: | Dr Mila Petrova |
| Contact Details: | Primary Care Unit Institute of Public Health University Forvie Site, Robinson Way Cambridge Cambs CB2 0SR UK Telephone: 63887 Fax: 01223 762515 E-mail: mp686@medschl.cam.ac.uk |
| Funding information | |
| Funding Organisation: | Health Innovation and Education Cluster (HIEC) hosted by Cambridge University Health Partners (CUHP) |
| Funding Reference: | |
| Funding Amount: | £77,073 |
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| Funding Organisation: | Collaboration for Leadership in Applied Health Research & Care East of England (CLAHRC EoE) |
| Funding Reference: | |
| Funding Amount: | £39,747 |
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| Additional Funding: | Brief periods of this research have been funded through the National School for Primary Care Research and the CCG Vanguard Project |
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| Further Information, References and Publications | |
| The Study has its own set of webpages here : Prepared to Share?
You can read a blog about the study here : Petrova M, Riley J, Abel J, Barclay S (2016). “A crash course in EPaCCS (Electronic Palliative Care Coordination Systems): eight years of successes and failures in patient data sharing to learn from”. BMJ Supportive and Palliative Care: published online Sept 2016 doi:10.1136/bmjspcare-2015-001059 |
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