Public Services > Healthcare

Sharing patient data must be embraced despite "understandable caution"

Neil Merrett Published 02 July 2014

Jeremy Hunt says record sharing must be embraced when in patient's "interest" as NHS England reveals scrutiny plans for care.data launch

The open availability of data will be a "great ally" in improving patient safety in the NHS despite concerns over confidentiality, with transparency serving as the main engine to drive such change, secretary of state for health Jeremy Hunt has said.

Hunt told delegates at the Improving Patient Safety Towards Harm Free Care conference in London that healthcare organisations faced a long and difficult journey to enact a culture change within hospital trusts to encourage more sharing of data and patient records. However, he maintained that while health providers needed to be cautious in sharing patient records, open data was the preferred direction towards positive reform of healthcare when deemed to be in the "interest" of patients.

"I think people have a right to have their medical records accessible by a clinician seeing them. I think we have changed the rules so clinicians and trusts don't just have a huge duty to protect confidentiality, but they also have to share records where it is in the patient's interests to do so," he said.

"I think there is understandable caution and we do need to be cautious because we don't want to destroy public confidence in the huge potential of single electronic health records that can be used everywhere in the system, which everyone agrees is where we have to go."

The comments were made as Tim Kelsey, national director for patients and information at NHS England, told a parliamentary health committee hearing on Tuesday that the organisation's care.data programme would be scrutinised by an independent panel during a pilot phase planned for later this year.

Kelsey told the committee that Dame Fiona Caldicott would lead the panel reviewing the organisation's controversial data collection plan, which aims to share patient medical records from GPs and healthcare providers with researchers and other specific groups.

Originally set to launch in April this year, NHS England delayed introducing the scheme until late 2014 on the back of privacy concerns raised by patients' and doctors' groups, as well as GPs.

Kelsey told the committee that NHS England had held over 100 events and meeting with various interests groups and key medical bodies since February over the direction of the care.data scheme and any concerns they felt needed to be addressed.

He added that during the pilot phase of the scheme, independent scrutiny of the project would be carried out with the collaboration of the Independent Information Governance Oversight Panel.

Kelsey said the pilot for care.data was expected to begin this year, either in late October or early November, though a final date would depend on NHS England meeting a number of conditions such as awaiting government regulations outlining restrictions on how data could be used for commercial purposes.

However, some healthcare professionals - while generally supportive of the overall purpose of the care.data - have continued to express concerns about patient records being shared unless an individual opts-out from inclusion in the scheme.

Just last week, the British Medical Association (BMA) voted in favour of adopting an opt-in model for NHS England's care.data scheme, rather than the opt-out model favoured by NHS England.

Healthcare professionals observed at the time that while the vote of delegates at the BMA's Annual Representative Meeting in Harrogate was unlikely to directly change NHS England's opt-out policy on care.data, it did serve to provide GPs with a mandate to oppose the current direction of the programme.

Speaking after Jeremy Hunt at the patient safety conference, Paula Mansell - themed inspection manager for England's independent health and social care regulator, the Care Quality Commission (CQC) - said obtaining health data was hugely important for its inspection work.

However, she added that she was unsure on how changes to care.data scheme that would require patients to opt-in to share their information, rather than being included by default, would impact its ability to conduct inspections.

"One of the things that we have found from the assessments and the inspections we have done so far is that the biggest issues were around information and information flows, that data is where it is needed for a patient to get the right clinical care," she said.

Related articles:

Department of Health issues guidance on data safe havens

BMA vote favours "opt-in" model for care.data


HSCIC vows to learn lessons from personal data review

HSCIC to create patient data security plan








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