The government has published the legal measures it hopes will allay fears over the controversial care.data programme, and insisted they will not prevent information being available for commissioning, research and public health.
The changes were laid this week as proposed amendments to the Care Bill, which is currently passing through Parliament.
One amendment states the Health and Social Care Information Centre would only be able to release data where it “would be for the purposes of the provision of health care or adult social care”.
Health secretary Jeremy Hunt confirmed earlier this week that he planned to make legal changes in an attempt to address concern about misuse of data from GP records, which would be extracted and made available under the care.data scheme, and opposition to the scheme.
There has been some concern legal changes would be made which could prevent information being used for research and commissioning.
However, a Department of Health spokesman told HSJ: “We have always been clear that this data should only be released for health or care purposes. This does not exclude commissioning, public health or research. It means that the HSCIC will not share data for purposes such as insurance or mortgage applications.”
No further definition of what would and would not be permitted has been published.
The amendments would also create a statutory committee whose advice the HSCIC must follow in relation to releasing data.
They state that the government will in future create legal regulations about the advice – suggesting ministers will be able to publish further guidance in future controlling what can be released.
In relation to this the DH spokesman said: “The second amendment ensures that HSCIC’s decisions can have external scrutiny by an independent advisory committee established by the Care Bill. This body will be established in statute and we intend to include in regulations strict new criteria to govern their advice to HSCIC.”
The advisory committee on information release is currently appointed by the NHS Health Research Authority, a body created in 2011 to regulate the treatment of patients in health research, but does not have a statutory basis.
Speaking at the NHS Health and Care Innovation Expo on Tuesday Mr Hunt said: “I will be supporting legislative changes that will give legal protection to any opt-outs and legal safeguards about how the data is used.”
The DH has also said it will publish directions to the HSCIC which will bolster safeguards for those wishing to opt out of their data being part of care.data. It is not clear when these will be published.
HSCIC chair Kingsley Manning welcomed the amendments. He said: “We very much welcome recent announcements by the secretary of state, including his intention to strengthen the legal basis of the HSCIC, which will increase patients’ ability to object to the indirect use of their data and reinforce the requirement for their interests to be at the forefront when decisions to release data are made.”
However, the HSCIC declined to comment on whether it was consulted on the amendments to the Bill which have been laid.
Separately, the HSCIC has announced it will publish a report on 2 April detailing all the data it has released to date, including the legal basis on which data was released and how it is being used.
It is also to launch an audit into all the data releases made by the NHS Information Centre, its predecessor organisation, to be presented to its board by the end of April.