The project began in 2013 as a small evaluation of the Cambridgeshire & Peterborough Project on Data Sharing in End of Life Care (the C&P Project). Hardly anyone spoke of data sharing then.

Soon after that care.data, a data sharing project of the UK Government, became front page news. People were worried that their health records might be sold for commercial gain. Patient data sharing has become a much more familiar topic. The need for research grew.

The aims of our study broadened:

• To evaluate initial phases (2013-2016) of the C&P Project. We asked where it succeeded and where it failed, and how we can use this knowledge to improve ongoing work.

• Understand better what different groups know, think and feel about data sharing. This concerned data sharing in general, and in complex conditions and at the end of life in particular. The people we surveyed or interviewed included health professionals, project developers, commissioners, patients, carers, IT experts, etc.

• The C&P Project is an Electronic Palliative Care Coordination System (EPaCCS). This has been a case study of EPaCCS. We also compared the C&P Project with Coordinate My Care and the South West EPaCCS, two of the most successful EPaCCS projects in England. We aimed to identify key drivers and challenges in developing such systems. See more here.

 

We were able to broaden the original study thanks to funding from CLAHRC EoE and HIEC.

 

Photo credits: ShadeON at iStock, by Getty Images.