Share my Care - data sharing in end of life care
Research type
Research Study
Full title
“Share my Care”: data sharing, coordination and collaboration in end of life care
IRAS ID
127708
Contact name
Stephen Barclay
Contact email
Research summary
Electronic Palliative Care Co-ordination Systems (EPaCCS) are systems where GPs create records for patients approaching the end of their life. The records are then shared with other services, such as out-of-hours, hospitals, A&E, ambulance services, community nursing services and hospices. EPaCCS are expected to improve the quality of end of life care - make it better coordinated, have patients’ wishes better respected, reduce unnecessary admissions and interventions, and reduce costs.
EPaCCS are one of several IT-based initiatives signalling a culture change in patient information sharing in the NHS. This is still new territory. The perceptions of patients, carers and health professionals of data sharing in end of life care have been little explored. There are also indications of differences of perspective between groups. For instance, patients often assume that record sharing is standard practice, while some GPs express concerns about increasing possibilities in that direction. A comparative study in data sharing in end of life care is thus particularly needed.
This study will explore perceptions of and attitudes to the Cambridgeshire EPaCCS “Share my Care”. A range of stakeholders will be interviewed – patients, lay carers, GPs, community nurses, out-of-hours staff, hospital doctors, ambulance staff, social services staff, decision makers, administrative and IT personnel. Data will also be collected through surveys, carer diaries and field notes.
Findings will be used to improve Share my Care and communications about it. They will also help understand how the context of dramatic change in the NHS and public concerns about end of life care are affecting the development and use of EPaCCS. The study will provide much needed evidence to inform models of health services delivery, funding and information governance for services which are dependent on effective data sharing. It will also contribute to theoretical knowledge on health innovation.
REC name
East of England - Cambridge East Research Ethics Committee
REC reference
13/EE/0291
Date of REC Opinion
25 Oct 2013
REC opinion
Further Information Favourable Opinion