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Lack of data sharing causing concern

12 December 2014

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Pilot schemes and public awareness campaigns to share patient data have been further delayed.

The launch of the programme, which aims to share data from patients medical records was initially planned for April 2014, but the NHS have announced that they will not have completed signing practices up to the scheme until the new year.

Doctors in different regions of the country will trial the system while keeping the public informed as to how it will work and the perceived benefits. There will also be an opt-out option for those not wanting their information to be shared.

The continual lack of start date and the absence of any public awareness campaigns about the process continue to raise concerns. A report from the All Party Parliamentary Group for Patient and Public Involvement in Health and Social Care highlighted that further clarification of data and penalties for those caught misusing the system needed to be outlined in more detail.

British Medical Association (BMA) executive team member Dr Brian Balmer said: “It is important that politicians follow through on their commitments and that along with NHS England and the BMA’s GP committee, we together find new ways of working to deliver the improvements that patients and GPs want to see. As part of this process, we must ensure that any extra investment is spent appropriately, including the GP infrastructure spending announced by the chancellor in last week’s autumn statement.”

The Royal College of Physiciand (RCP) agrees and added that in order for the scheme to work “consent for participation in the scheme must be ‘presumed’ so that patients have to actively ‘opt-out’ should they not wish any of their data to be shared.

“An ‘opt in’ approach based on active consent would render the scheme inoperable as this is likely to result in a low participation rate, which in turn will yield insufficient data to be able to draw meaningful conclusions that will bring benefits to future patients.