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End of life care preferences to be recorded and shared electronically, in plans to digitise NHS

14 November 2014

Plans to transform people's health and improve services through digital technology were unveiled this week by the Department of Health.

Personalised health and care 2020: a framework for action’ outlines a vision for how better use of data and technology can improve health, transform the quality and reduce the cost of health and care services.

Along with committing to giving everyone online access to their GP records from spring 2015, the document outlines how patients will be able to add their own comments and details of care preferences to their records by 2018.

In addition to GP records, there is an ambition to offer people access to all of their health records – held by hospitals, community, mental health and social care services – by 2018.

The document also suggests that patients will be able to access records via approved apps, with an NHS ‘Kitemark' helping patients and staff to use and recommend apps which can be trusted.

The plans also include making care records available electronically, with consent, across the health system by 2018 for urgent care services and 2020 for all services – dramatically improving coordination of care, and meaning that patients will only have to tell their story once.

The report highlights the success of 'Coordinate My Care', developed at the Royal Marsden NHS Foundation Trust, which lets patients with life-limiting illnesses define a personalised urgent care plan that is shared electronically with all agencies and professionals involved in their care, including NHS 111, London Ambulance Service, GPs, social care and accident and emergency.

Earlier this week, Caroline Weston, policy and public affairs manager at Marie Curie, wrote about how plans to improve information sharing will benefit people living with a terminal illness and their families.

In addition to the new report, it was announced that Dame Fiona Caldicott has been appointed to the new role of National Data Guardian for health and care. The National Data Guardian will become the patients’ champion on security of personal medical information.

No data will be extracted from GP practices as part of the care data programme until Dame Fiona has advised the Secretary of State that she is satisfied with the proposals and safeguards.

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