Commitments to share data when it is in the interests of patients have been bolstered by an anonymisation standard, released today (30 April 2013).
Starting today, all organisations that publish information about publically-commissioned health and social care outcomes will have to follow the standards.
Launched by the Health and Social Care Information Centre (HSCIC) and approved by the Department of Health and Information Standards Board (ISB) the standards aim to outline what makes data identifiable.
The launch follows the publication of Caldicott 2, an updated review on data protection and information governance in the health and social care system.
Dame Fiona Caldicott’s second report, Information: To share or not to share, was released late last week.
The report suggested that a patient’s information should be shared when it is in their best interest and patients should be able to see a trail of who has accessed their data.
Jeremy Hunt, Health Secretary, said more guidance is coming for general practice on whether they should share personal records with HSCIC.
He said: “I’m very clear that I have the power, or NHS England has the power to give guidance to GPs about whether or not people’s personal records are shared.
“If people ask for their information not to go beyond their GP surgery, GPs will respect that.”
And Clare Sanderson, director for solution design standards at HSCIC said: “The Government’s open data agenda is putting more data into the public domain, allowing the public to find out more than ever about the performance of public bodies.”
She added: “That’s a great benefit to everyone but we must ensure that we don’t publish information that could identify individuals.”
An HSCIC spokesman said Caldicott 2 aims to “identify the balance between protecting and using data to improve care outcomes.”
The spokesman said: “The review highlights our role as a safe haven for the secure analysis of health data to improve outcomes for patients, as set out in the Health and Social Care Act 2013.”
However, the British Medial Association (BMA) has revealed concerns about how safe havens will be implemented.
Safe havens are areas where commissioners and researchers can carry out analysis under secure conditions, with the possibility of seeing identifiable data such as NHS numbers.
Dr Calland, chairman of BMA’s Medical Ethics committee said: ““While health data is vital to improve health services and medical research, it is essential that the strict controls described in the Review for safe havens are scrupulously adhered to and regularly audited by an independent body.”
Royal College of General Practitioners (RCGP) chair Dr Clare Gerada believes better sharing will provide “better outcomes for patients”.
She said: “We agree with the report’s conclusion that action is needed to tackle the ‘culture of anxiety’ around sharing information that can create unnecessary barriers to closer working between health professionals.
“However, it is vital that patients are informed about and engaged in how information about their care is used, and we agree that patients should have ‘no surprises’ about the use of their data.”
The Anonymisation Standard – the Anonymisation Standard for Publishing Health and Social Care Data is available on the Information Standards Board website.
A full copy of the Caldicott review is available on the Department of Health website.