BMJ 2014;348:g1566 doi: 10.1136/bmj.g1566 (Published 14 February 2014)
Page 1 of 2
News
NEWS Government must do more to explain benefits of centralised database Gareth Iacobucci BMJ
The UK government should be wary of rolling out its national centralised database of patients’ medical records until it has averted the current “crisis of confidence” in the plans, the Royal College of General Practitioners has warned. The “care.data” programme is being launched to assist in medical research and monitor NHS trends and performance more closely, by linking patients’ GP records with information already collected from acute trusts through hospital episode statistics (HES).1
But the scheme has attracted criticism from campaigners and some GPs, who are concerned that holding patients’ confidential data on a national database could increase the risk of privacy breaches or allow information to be obtained inappropriately by insurance companies. The college said that it supported the aims of the project but said that the authorities had failed to properly inform patients and GPs about its benefits and the safeguards that would be applied to guard against breaches.
It called for a renewed push from ministers and NHS England to communicate to patients “the benefits of the scheme, what their rights are, and what their rights to opt out are.”
Nigel Mathers, the college’s honorary secretary, said, “We are very concerned that, with just seven weeks to go before the national roll out, the public have not been properly informed about the benefits of and the safeguards surrounding the care.data programme. “The inevitable result of the failure to make the case for the scheme is the crisis of public confidence that we are now seeing.”
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The college believed that the scheme could help improve patient care in a number of ways, Mathers said, such as using data to build up a picture of which treatments worked best during outbreaks of infectious disease. But he cautioned: “We urgently need reassurance about what plans are being made to address current GP and public concerns to restore public confidence in the scheme.
“The government and NHS England need to act immediately, otherwise further questions will inevitably be asked about the wisdom of rushing the scheme through before the current gaps in information and awareness have been addressed. “It would be a tragedy if something that could have enormous benefits for patient care falls at the first hurdle because of a failure of communication.
“It is vital that patients and doctors are as informed and as confident as they can be in the scheme and in the safeguards in place to ensure patient confidentiality, before it is introduced across England.”
He said that the college had been informed by NHS England that the Health and Social Care Information Centre, which will hold the extracted data, did not make profit from providing data to other organisations. “Data will not be sold to insurance companies for the purposes of insurance, and that confidential data can only be disclosed where allowed by the law,” he said. 1
NHS England. Care episode statistics: technical specification of the GP extract. 2013. www.england.nhs.uk/wp-content/uploads/2013/05/ces-tech-spec-gp-extract.pdf.
Cite this as: BMJ 2014;348:g1566 © BMJ Publishing Group Ltd 2014
Subscribe: http://www.bmj.com/subscribe
BMJ 2014;348:g1566 doi: 10.1136/bmj.g1566 (Published 14 February 2014)
Page 2 of 2
NEWS
Figure
For personal use only: See rights and reprints http://www.bmj.com/permissions
Subscribe: http://www.bmj.com/subscribe
Page 1 of 2
News
NEWS Government must do more to explain benefits of centralised database Gareth Iacobucci BMJ
The UK government should be wary of rolling out its national centralised database of patients’ medical records until it has averted the current “crisis of confidence” in the plans, the Royal College of General Practitioners has warned. The “care.data” programme is being launched to assist in medical research and monitor NHS trends and performance more closely, by linking patients’ GP records with information already collected from acute trusts through hospital episode statistics (HES).1
But the scheme has attracted criticism from campaigners and some GPs, who are concerned that holding patients’ confidential data on a national database could increase the risk of privacy breaches or allow information to be obtained inappropriately by insurance companies. The college said that it supported the aims of the project but said that the authorities had failed to properly inform patients and GPs about its benefits and the safeguards that would be applied to guard against breaches.
It called for a renewed push from ministers and NHS England to communicate to patients “the benefits of the scheme, what their rights are, and what their rights to opt out are.”
Nigel Mathers, the college’s honorary secretary, said, “We are very concerned that, with just seven weeks to go before the national roll out, the public have not been properly informed about the benefits of and the safeguards surrounding the care.data programme. “The inevitable result of the failure to make the case for the scheme is the crisis of public confidence that we are now seeing.”
For personal use only: See rights and reprints http://www.bmj.com/permissions
The college believed that the scheme could help improve patient care in a number of ways, Mathers said, such as using data to build up a picture of which treatments worked best during outbreaks of infectious disease. But he cautioned: “We urgently need reassurance about what plans are being made to address current GP and public concerns to restore public confidence in the scheme.
“The government and NHS England need to act immediately, otherwise further questions will inevitably be asked about the wisdom of rushing the scheme through before the current gaps in information and awareness have been addressed. “It would be a tragedy if something that could have enormous benefits for patient care falls at the first hurdle because of a failure of communication.
“It is vital that patients and doctors are as informed and as confident as they can be in the scheme and in the safeguards in place to ensure patient confidentiality, before it is introduced across England.”
He said that the college had been informed by NHS England that the Health and Social Care Information Centre, which will hold the extracted data, did not make profit from providing data to other organisations. “Data will not be sold to insurance companies for the purposes of insurance, and that confidential data can only be disclosed where allowed by the law,” he said. 1
NHS England. Care episode statistics: technical specification of the GP extract. 2013. www.england.nhs.uk/wp-content/uploads/2013/05/ces-tech-spec-gp-extract.pdf.
Cite this as: BMJ 2014;348:g1566 © BMJ Publishing Group Ltd 2014
Subscribe: http://www.bmj.com/subscribe
BMJ 2014;348:g1566 doi: 10.1136/bmj.g1566 (Published 14 February 2014)
Page 2 of 2
NEWS
Figure
For personal use only: See rights and reprints http://www.bmj.com/permissions
Subscribe: http://www.bmj.com/subscribe
