NHS England has defended the controversial patient record-sharing programme Care.data following what it admits was an ‘enormous outcry’ in the way it was initially implemented.
Tim Kelsey, the national agency’s director for patients and information, suggested there should have been more discussion with patients about the ownership of their health records before the sharing regime was launched in last year.
NHS England has now scrapped its timetable for the roll out of the data sharing regime which had been due to restart in September after a six month pause. This delay had been introduced to help restore public confidence in the project after concerns were raised about how it would handle confidential health data.
Mr Kelsey told the NHS Confederation’s annual conference in Liverpool last week that “one of the most important conversations we all need to have, if we are going to liberate ourselves as patients, citizens, managers and clinicians…is a conversation about the rights I have to my own data and how it should be shared”.
He admitted that this conversation had not taken place before the Care.data scheme had been conceived. “It has never occurred in any public service, certainly not in healthcare,” he added.
“We paused [care.data] because there was this enormous outcry and uncertainty [from people asking] ‘What’s happening with my data?’”.
Speaking to HSJ, Mr Kelsey said that regulations which detailed what counted as acceptable uses of data would be put out to consultation soon.
These will expand on amendments made to the Care Act earlier this year which state that confidential data should only be released for “the purposes of the provision of health care or adult social care, or the promotion of health”.