Government scraps NHS Patient Database Scheme

The government has decided to shut down its controversial care.data scheme after concerns were raised about the safeguards in place to protect individuals’ health care data and issues with patient transparency. The care.data scheme was plagued by delays since it was first placed on hold in February 2014, shortly before the first patient records were due to be extracted.

Under the scheme, all NHS patients’ health care data was held in a central database. The NHS claimed that the program would benefit patients through improved knowledge of drug performance, greater budget efficiencies and an ability to compare regional performance across the UK.

However, two separate reports, one published by Dame Fiona Caldicott, the UK’s National Data Guardian for Health and Care, and the other by the Care Quality Commission, were critical of the safeguards currently in place and made a number of recommendations including:

  • a new consent/opt-out model to give people a clear choice about how their personal data is used for purposes outside of their direct care
  • new data security standards for all organisations handling health and social care information
  • improved organisational measures, including the provision of training and support to staff, a system of internal audit and external verification and enhanced risk management procedures; and
  • more extensive dialogue with the public about how their information will be used and the benefits of sharing for their own care, for the wider care system and for research purposes.

NHS England has taken the decision to close the care.data programme. However, the Department of Health says it remains “absolutely committed to realising the benefits of sharing information, as an essential part of improving outcomes for patients.”This may mean that another similar scheme will be introduced in due course.

DISCLAIMER

This article is intended for informational purposes only and should not be relied upon as legal advice.

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