NHS Care.data information scheme 'mishandled'
The chair of the panel set up to advise the NHS and ministers on the governance of patient information has told the BBC the Care.data programme was mishandled.
Under the scheme, GP records in England will be put on a database and combined with other data to improve care.
Dame Fiona Caldicott, chairwoman of the Independent Information Governance Oversight Panel (IIGOP), told the BBC that "there was too much hurry".
She said the public information campaigns were not clear enough.
She also said NHS England had not followed the IIGOP's advice on making the text clearer on the leaflet designed to inform every household of the programme.
A BBC survey found that fewer than a third of those polled could recall getting the leaflet.
Dame Fiona also could not recall receiving a leaflet.
If her panel's advice to improve the text of the leaflet had been followed, "perhaps things would not have unfolded in quite the way that they did", she said in an interview with Radio 4's PM programme.
Following criticism of the Care.data information campaign from professional bodies such as the BMA and the Royal College of General Practitioners, the uploading of data from GP practices was delayed by six months to the autumn.
"It may not be long enough," said Dame Fiona. Although she felt the six-month delay had been useful, she said testing of the scheme with some practices and patients might reveal a longer pause was required.
In a statement, NHS England said: "We've been listening and acting on the views of patients, the public, doctors and others, and are making key changes in response."
It also pointed to moves in parliament to strengthen legal safeguards of patient data.
Following the row about Care.data, other concerns emerged about the use of existing pools of NHS data, particularly hospital episode statistics, by private firms.
Critics worry about so-called "commercial reuse licenses".
Such licences were an area that Dame Fiona said she was "not comfortable with" and urged greater transparency.
Dame Fiona's intervention is significant.
She is the author of two reports that have looked at how the NHS may best use patient information and share data while retaining the trust of patients.
Within each NHS organisation the staff member responsible for protecting the confidentiality of patient information is called a Caldicott Guardian.
The 11-member IIGOP panel she chairs even includes representatives from the Health and Social Care Information Centre, the body responsible for storing and providing access to NHS data.
The panel exists to provide "independent advice and challenge to the whole health and care system" on information governance issues, and to deliver annual updates to the Secretary of State for Health.
But Dame Fiona says in her personal view it needs increased powers and its recommendations should carry the weight of law.
"We don't have the resources, and I think learning from what has happened with these recent difficulties, there's evidence that such a panel needs to be on a statutory basis," she said.
Dame Fiona remains convinced that collecting and making use of health data through programmes like Care.data will yield great benefits.
But she also feels the NHS has moved too quickly, and has not always taken patients with it in the drive to make use of data.
"I can understand how it happens but in general terms there has been too much haste," she said.