NHS boss claims patient data collection is 'morally right'

Tim Kelsey warns of huge gaps in NHS knowledge if patient data is not collected

Collecting patient data is a moral requirement, the man in charge of the NHS's controversial care.data scheme claimed today.

Tim Kelsey, national director for patients and information at NHS England, warned that collecting and storing patients' medical records was the only way to fill huge gaps in NHS knowledge.

He said: "There are gaps so big, so dangerous, that they just have to be filled from a moral as well as a political perspective. We're going to be doing that this year.

"The NHS is not capable currently of telling you how many patients are treated for chemotherapy, for example. And certainly not capable of telling you that if they are treated, [then] what is their outcome."

Speaking at WANdisco's Big Data Breakfast event in London earlier today, Kelsey also admitted that public concern over the privacy of their data under the care.data scheme was legitimate.

Care.data would see people's health records connected to the Health and Social Care Information Centre, allowing for information to be shared between GP surgeries as well as hospitals.

The roll out of the 50 million scheme was meant to start in April 2014, but was postponed for six months due to a lack of proper public consultation.

A report released last month by All Party Parliamentary Group for Patient and Public Involvement in Health and Social Care added that concerns remain over the collection of private information.

It read: "Patients and the public are broadly supportive of the principle of using health data for research that is in the public interest.

"However, many people still have deep concerns about the programme and are worried about how their personal data will be used."

Today Kelsey said the scheme, due to be trialled in GP practices this year, was starting afresh, despite delays in naming the surgeries and GPs set to take part in the trials.

He said: "Care.data seemed like it was a failure last year when we had to bring it to a halt because of the media campaign, and I think legitimate public concerns... in relation to people's privacy.

"Care.data is starting again now - there's some pathfinder localities that are going to be beginning to work with local communities on extracting data, linking GP data with hospital data, building new ways we can analyse the pathway of care a patient has travelled down."

The Independent Information Governance Oversight Panel (IIGOP) published a report examining if health and social care bodies were protecting personal data properly, after laying out 26 recommendations at the start of 2014 to improve data sharing.

The report found organisations were only making good progress on six points. Its conclusion was: "The report card at the end of the first year after the Government's acceptance of the recommendations reads: "Must try harder."

"It is now time for the health and care system to increase the pace of efforts to get information governance right."

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