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NHS at risk if patients are not convinced to share medical records, says senior official

The future of the NHS is at risk if patients in England elect not to allow their patient records to be extracted from their GPs' systems, a senior official at NHS England has said.

In response to questions by MPs at an inquiry into the 'care.data' scheme, Tim Kelsey, national director of patients and information at NHS England, said that it was important for health care providers to be able to access both hospital data and GP records to improve health care services.

"We want as many people as possible to agree to share their data in the [care.data] programme," Kelsey said. "The larger the amount of data the more use it will be. There is no point at which the data is of no use. There is no percentage at which this becomes useful or not, it is useful at every point of its sharing."

"If 90% of the population decide that they would [opt out of sharing their data recorded by GPs] then we wouldn't have a health service very much longer," he added.

"Our ignorance of what happens to people outside hospitals is one of the key reasons why sadly England has one of the lowest cancer survival rates in Europe. Care.data is not just about research it is also about genuinely saving lives in the NHS," Kelsey said.

Currently, patient data collected by hospitals is used, under certain circumstances, to help improve health care services. Under the 2012 Health and Social Care Act, a new Health and Social Care Information Centre (HSCIC) was given power to compel the gathering of certain patient data gathered from GP surgeries to add to the data already gathered by hospitals in a new database, known as 'care.data', unless individuals opt out.

As well as using the data to improve health services and within medical research projects, HSCIC will have the power to grant third parties access to the data it collects for certain purposes and under certain circumstances.

However, earlier this month NHS England announced that the data gathering exercise, which was due to start in April, would be postponed by six months after admitting that it had failed to explain properly how the care.data scheme would work and patients' opt out rights.

The UK Parliament's Health Committee inquiry session took place after reports that a predecessor to the HSCIC had shared some patient hospital data with insurance industry body the Institute and Faculty of Actuaries (IFA). HSCIC admitted that the data had been shared with the IFA in error.

"The HSCIC believes greater scrutiny should have been applied by our predecessor body prior to an instance where data was shared with an actuarial society," it said. "We would like to restate that full postcodes and dates of birth were not supplied as part of this data and that it was not used to analyse individual insurance premiums, but to analyse general variances in critical illness."

The HSCIC said that neither "pseudonymised [nor] identifiable" data would be shared with "insurance companies for the purpose of checking premiums or claims" under the terms of the Health and Social Care Act.

"Further, members of the public should know that The HSCIC board agreed in January 2014 that a report detailing all organisations to whom we give data, whether it was identifiable or pseudonymised, and the grounds on which it has been released, will be made public on the website every quarter," it added. "We are absolutely committed to the public understanding what is being done with their information."

Tim Kelsey of NHS England also confirmed to the Health Committee that all users of data under the care.data scheme "will be audited".

Max Jones, director of information and data services at the HSCIC, added that the body "does not seek to make a profit from selling data" and operates on a "cost recovery basis only". He confirmed that outsourcing company Atos had been contracted to extract data from GPs' records and said that not every detail from those records would be extracted.

Jones said "great care" has been taken to "make sure we only extract the coded extracts" from patient records and not the "free text notes" from patients' consultations with GPs. Data on "explicit conditions which were excluded from those extractions", such as HIV and sexually transmitted diseases and IVF treatment, will also be able to be gathered, he said. No data extraction would occur where individuals opt out.

The data once extracted is brought into the "safe haven" of the HSCIC and processed by its staff and will be held on a "national basis", Jones added.

Dr Chand Nagpaul, chair of the British Medical Association's GPs Committee, said that there has to be an "assurance to the public" about the safety of their data recorded.

"At the heart of our concern as GPs is that if patients mistrust, or are concerned about the security of their data, or have concerns about how this data will be used, that would actually, potentially, irrevocably damage that fabric of trust when a patient walks into a GP surgery," Nagpaul said. "And that may actually have other consequences around confidence in the way the NHS records data, it may actually result in patients not attending their GP surgery at all for fear of what may happen to their records or data or if they do attend actually be inhibited in being totally open about some things and maybe not about others."

Privacy campaigner Nick Pickles of Big Brother Watch said that whilst there were "laudable aims" behind medical research and improving transparency and outcomes across the health service, he said there were other ways to improve health care but deliver better privacy, a consent mechanism and transparency into the system.

"Any future plan to use patient data in an identifiable or even pseudonymised format should always come with a full transparent conversation with the public and a consent mechanism," Pickles said. "That should be the norm going forward and we should not return to a system where things happen that patients didn't know about and that was taken as consent."

NHS England's explanation of how care.data would work and which organisations would have access to the patients' data and for what purposes had been "far from adequate", he added.

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