A Care Bill amendment designed to increase safeguards for patients’ confidential information in the Care.data programme, was rejected by the House of Lords this week.
The amendment, put forward by Lord Owen and backed by the Wellcome Trust, would have given a group led by Dame Fiona Caldicott statutory oversight over information governance in the entire NHS and social care system.
Dame Fiona, chairwoman of the Independent Information Governance Oversight Panel, had already called for her group to be given statutory powers during a BBC Radio 4 interview.
GPs and campaigners have raised concerns that the data would not be secure and vulnerable to misuse, sparking media outrage.
Health minister Lord Howe said he was “sympathetic” but that ministers would instead explore how best to safeguard records without the need for law changes.
The amendment was voted down by 259 to 165.
Dame Fiona has overseen two government reviews of information governance in the health, the second of which was published last April.
Meanwhile, minutes from the Care.data independent advisory group’s first meeting in April outlined a range of issues the group is examining in relation to the data sharing scheme.
These include governance arrangements; opt out arrangements; and how smaller organisations could gain access without going through the bureaucracy expected of frequent users.
The group is attended by senior researchers, privacy campaigners and other representatives of other interested bodies. It is chaired by MacMillan Cancer Support chief executive Ciaran Devane, who is also an NHS England non-executive.
The minutes revealed doubts around health secretary Jeremy Hunt’s desire for a ban on any private company found to misuse the data being blocked from using NHS data in the future.
The minutes, which are unattributed, said: “‘One strike and out’ may be a headline grabber but is it workable? Conditions (stringent) around this will be critical.”