New information governance rules must ensure patients are no longer “surprised or shocked” about how their records are being used or shared, the chair of a national review has said.
Dame Fiona Caldicott, chair of the independent Information Governance Review, said on Tuesday she would present a full report to ministers in February or March 2013, slightly later than initially recommended by the NHS Future Forum.
She endorsed “protocols for sharing across both health and social care and to spell out more clearly what the boundaries of implied consent are”.
Dame Fiona told the Healthcare Efficiency Through Technology Expo conference: “Some patients are quite shocked when they hear how their information is used when they have not been asked for permission.
“One of the principles we would like to put forward is that there should not be surprises as far as the individual is concerned about how their information is used.”
The review was commissioned by the Department for Health following recommendations drawn up by the Future Forum which said it should “report during 2012”.
Its mandate, Information: to share or not to share?, published in July, said it would “make recommendations concerning the appropriate balance between the protection of personal information and the use and sharing of information to improve care”.
The mandate said the review would investigate how information “may be safely shared and better utilised to support the care of individuals and the wider population” and how information governance could enable “sharing whilst also protecting individuals’ confidentiality and respecting their wishes”.
The invitation from then health secretary Andrew Lansley to Dame Fiona added: “The NHS must move to using its IT systems to share data about individual patients and service users electronically – and develop a consent model that facilitates this – in the interest of high quality care”.
The use of sharing patient records electronically was drawn into sharp focus at the conference when Tim Kelsey, the NHS Commissioning Board informatics chief, told the conference the government will this month commit the NHS to a “paperless” future.
The board’s director of patient and public engagement, insight and informatics said the first ever government mandate issued to the commissioning board would “contain a commitment for a paperless NHS” and a resulting switch to digital communications.