“Prepared to Share?” is a study on patient data sharing in complex conditions and at the end of life. It evaluates the Cambridgeshire & Peterborough Project on Data Sharing in End of Life Care. It also studies data sharing more broadly.

Data sharing in our daily lives can be so easy. Most people believe that it is the same in the healthcare system. Many think that there is a unified electronic NHS record.

In fact, each organisation has electronic or paper records of its own. IT systems of different organisations generally do not talk to one another. There are legal and ethical challenges that make patient data sharing difficult.

 

Research on the topic is important because:

• All of us will need end of life care. We will accompany loved ones who are dying. We will face death ourselves. There is often only “one chance to get it right”.

• Patients at the end of life often need care from a large number of health professionals. These include their GP, district nurses, ambulance crew members, hospital staff, out-of-hours staff, specialist palliative care team members, hospice staff, etc.

• Many of these health professionals will have never met this patient before. They will know nothing of their underlying condition or wishes and preferences for end of life care. They may not realise the patient is dying. The patient’s condition may change rapidly. It is thus crucial to have up-to-date information about end of life care patients and to share it easily across settings.

• Electronic Palliative Care Co-ordination Systems (EPaCCS), of which the Cambridgeshire and Peterborough Project is one, have been suggested as a way of improving coordination and communication in end of life care.

• EPaCCS hold much promise, both in terms of improving quality of care and cost effectiveness. They are, however, difficult to develop. Research on them is sparse. Over 80 EPaCCS were being developed across England as of 2013, yet there are very limited descriptions of their models, only a few successful examples, and no robust evidence that they make a difference.

 

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