NHS data: 'People have become over-concerned about protecting confidentiality': Dame Fiona Caldicott's report emphasises that patients are at risk if clinicians base decisions on inadequate data.
Plans to share patient information electronically date back to the Blair government's over-ambitious and now defunct NHS national programme for IT. And despite the coalition's aim that all 6,000-plus GP practices in England must offer patients online access to their records by 2015, so far only 61 are doing so.
In her landmark report on patient information in health and social care, Dame Fiona Caldicott puts greater sharing of patient data at the forefront of her 26 recommendations to improve services, provided it is in the interest of patients.
Caldicott is a respected psychiatrist and psychotherapist, known as the originator of the "Caldicott guardians", who make decisions about sharing identifiable data in the NHS and social services. She was commissioned by Andrew Lansley in 2012 to examine the balance between protecting the confidentiality of patient data and sharing to improve care.
The former health secretary's request followed the recommendation of the NHS Future Forum the same year, which identified information governance as an impediment to sharing information, even when sharing would have been in the patient's best interest.
"Our conclusion is that the balance isn't right," says Caldicott. "People have become over-concerned about protecting confidentiality."
Her review team's report emphasises that patients are at risk if clinicians base their decisions on inadequate data and that dangers multiply if there is poor handover of information between care teams or conflicting advice to patients from professionals.
"We certainly heard about situations where there was agreement about sharing across boundaries, but then somebody in a managerial position would decide that the systems were not giving enough protection of confidentiality and the agreement was stood down," she says. "And people do not like that in relation to their own wellbeing and how they are looked after."
Although in the 12 months to the end of June 2012, 186 serious data breaches were notified to the Department of Health, Caldicott points out that these were all about data losses and breaches of the Data Protection Act – but not sharing.
But are there the resources to achieve a fundamental cultural shift in the approach to learning about information governance? "I don't think it requires huge new courses and so on," Caldicott replies. "It just requires that people from time to time, as they become more senior, have the opportunity to look at information governance and how it affects their work and perhaps share the thoughts and considerations that need to be looked at."
Caldicott says that a year was a short time for her review and, in addition to more work on staff education, she identifies increasing public awareness about information sharing as a priority.
"While there are professionals who are familiar with the issues of confidentiality, data sharing and the various systems in place at the moment, we are not sure that the public is given sufficient information," she maintains.
"So I think one of the things is how we can help the public – and of course that is a very varied group of people: some are patients, some are carers, some are healthy but interested, and so on – to know more about what is going on in the new health and social care system."
The Lansley commissioned-report is Caldicott's second investigation into confidentiality and patient data. Asked about the biggest change since her previous review, published in 1997, Caldicott responds that in the early 1990s computers were just beginning to be used in hospitals and primary care, whereas now IT is used throughout the NHS.
"And it is partly that that has given rise to anxiety on the part of some members of the public that their confidential information is at risk of being lost or used inappropriately," she argues.
In many trusts, however, IT systems are not linked within hospitals, and even fewer are linked between hospitals and other part of the NHS. "I think that most NHS patients would be astonished to know that their information doesn't flow around the system," says health secretary Jeremy Hunt.
He believes that Caldicott and her team have created the intellectual framework through which to approach better information sharing.
"There are many things in here, as with the Francis report, which we will have to work through and give a detailed response on," he says. "But we absolutely accept the spirit of what is being recommended here and think it represents a good way forward."
Hunt's initial response gives Caldicott cause for optimism, although it will be the summer before he responds more fully.
"While there are still things for some people to worry about, I do think that there is more coming together to make sure the system really does put the patient – as the user – at the forefront," she says. Guardian Professional.
Plans to share patient information electronically date back to the Blair government's over-ambitious and now defunct NHS national programme for IT. And despite the coalition's aim that all 6,000-plus GP practices in England must offer patients online access to their records by 2015, so far only 61 are doing so.
In her landmark report on patient information in health and social care, Dame Fiona Caldicott puts greater sharing of patient data at the forefront of her 26 recommendations to improve services, provided it is in the interest of patients.
Caldicott is a respected psychiatrist and psychotherapist, known as the originator of the "Caldicott guardians", who make decisions about sharing identifiable data in the NHS and social services. She was commissioned by Andrew Lansley in 2012 to examine the balance between protecting the confidentiality of patient data and sharing to improve care.
The former health secretary's request followed the recommendation of the NHS Future Forum the same year, which identified information governance as an impediment to sharing information, even when sharing would have been in the patient's best interest.
"Our conclusion is that the balance isn't right," says Caldicott. "People have become over-concerned about protecting confidentiality."
Her review team's report emphasises that patients are at risk if clinicians base their decisions on inadequate data and that dangers multiply if there is poor handover of information between care teams or conflicting advice to patients from professionals.
"We certainly heard about situations where there was agreement about sharing across boundaries, but then somebody in a managerial position would decide that the systems were not giving enough protection of confidentiality and the agreement was stood down," she says. "And people do not like that in relation to their own wellbeing and how they are looked after."
Although in the 12 months to the end of June 2012, 186 serious data breaches were notified to the Department of Health, Caldicott points out that these were all about data losses and breaches of the Data Protection Act – but not sharing.
But are there the resources to achieve a fundamental cultural shift in the approach to learning about information governance? "I don't think it requires huge new courses and so on," Caldicott replies. "It just requires that people from time to time, as they become more senior, have the opportunity to look at information governance and how it affects their work and perhaps share the thoughts and considerations that need to be looked at."
Caldicott says that a year was a short time for her review and, in addition to more work on staff education, she identifies increasing public awareness about information sharing as a priority.
"While there are professionals who are familiar with the issues of confidentiality, data sharing and the various systems in place at the moment, we are not sure that the public is given sufficient information," she maintains.
"So I think one of the things is how we can help the public – and of course that is a very varied group of people: some are patients, some are carers, some are healthy but interested, and so on – to know more about what is going on in the new health and social care system."
The Lansley commissioned-report is Caldicott's second investigation into confidentiality and patient data. Asked about the biggest change since her previous review, published in 1997, Caldicott responds that in the early 1990s computers were just beginning to be used in hospitals and primary care, whereas now IT is used throughout the NHS.
"And it is partly that that has given rise to anxiety on the part of some members of the public that their confidential information is at risk of being lost or used inappropriately," she argues.
In many trusts, however, IT systems are not linked within hospitals, and even fewer are linked between hospitals and other part of the NHS. "I think that most NHS patients would be astonished to know that their information doesn't flow around the system," says health secretary Jeremy Hunt.
He believes that Caldicott and her team have created the intellectual framework through which to approach better information sharing.
"There are many things in here, as with the Francis report, which we will have to work through and give a detailed response on," he says. "But we absolutely accept the spirit of what is being recommended here and think it represents a good way forward."
Hunt's initial response gives Caldicott cause for optimism, although it will be the summer before he responds more fully.
"While there are still things for some people to worry about, I do think that there is more coming together to make sure the system really does put the patient – as the user – at the forefront," she says. Guardian Professional.
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