According to the group, the leaflet was sent to it shortly before it met for its quarterly meeting on 9th December 2013 and on the next day, IIGOP advised NHS England that it was not fit for purpose.
However, the healthcare service then informed the Panel that it had already been sent to the printers and would not be recalled.
The leaflet was intended to provide clarification for UK citizens what the care.data scheme is, potential benefits and safeguards in place to protect personal data.
“When the leaflet was distributed, it raised more than it answered, triggering debate in the media and in Parliament,” claims the report.
“There were concerns that patients were not adequately informed about their right to refuse to allow their data to be uploaded from their GP surgery, or to restrict its subsequent use, without any impact on their direct care.
“Many people could not recall receiving the leaflet and there were doubts about how widely it had been distributed.
“There was also concern that there were insufficient safeguards to stop data being disclosed outside the NHS, including the absence of a prohibition on disclosure to insurance company,” it adds.
The IIGOP report card at the end of the first year after the government acceptance of the recommendations reads “must try harder.”
“It is now time for the health and care system to increase the pace of efforts to get information governance right,” it claims.
The Panel has made five recommendations for NHS England that it believes will improve the situation.
Its report urges the organisation to ensure transparency and openness to enable public understanding, the ability for patients to opt out of data sharing agreements, and strong leadership to drive recommendations given.