NHS England has set up an independent advisory group to improve governance around the care.data programme.
The group will be chaired by Ciaran Devane, chief executive of Macmillan Cancer Support and non-executive director of NHS England.
NHS England has also hired a new communications manager, Tim Carter, whose role is to ensure communications and public awareness of the programme.
Speaking at the care.data symposium at HC2014 in Manchester this week, Carter said the group has been created to ensure that care.data does not do anything the public does not want it to.
“We are listening and people are telling us some really hard stuff to hear. The care.data advisory group is a really important part of that,” he said.
“What we’ve done is asked Ciaran Devane to chair an independent advisory group to advice, guide and tell us every step of the way: a) what they think we should do, b) what they are hearing about what we are doing, and c) is to let us know when we’ve stepped out of line.”
The care.data programme will link an expanded set of Hospital Episode Statistics with new datasets, starting with an extract from GP practices, within the ‘safe haven’ of the Health and Social Care Information Centre.
It was due to start GP extractions in March this year, but the launch date was pushed back to September, following widespread media coverage and concerns from GP bodies, patients and privacy campaigners about how the data will collected and used.
Carter said that during the six-month extension to the programme, NHS England will work on showing the public the real personal benefits of data collection.
“Part of the reason why there has been such public outrage is because the organisation did not think it would be challenged on it, and therefore did not think to explain to the public exactly what was happening,” he said.
“As part of the new communications campaign, everything will be explained in proper human language.”
Devane said: "I hope that with a diverse range of people and opinions in the room, the advisory group will consider as many issues and points of view as we can. I would want us to suggest how to address the concerns which have been raised, but also consider some principles which should guide future programmes.
“I know everyone who will be contributing time and thought over the next weeks will be committed to finding solutions which drive improvement in patient care, but also to doing so in ways which work for general practice,” he said.