The government agency that distributes NHS data to external research bodies has choked the flow of information while it conducts a wide-ranging review, sparking “frustration” among the researchers and charities which rely on the data.
The Health and Social Care Information Centre told its “customers” in a letter circulated last month that the “comprehensive review” of its policies, governance and processes aimed to help build public trust, following the damage inflicted by the Care.data debacle last year.
Care.data is NHS England’s project to link up patients’ hospital and GP data to create a national database for use by NHS organisations and private research organisations.
The letter, by the body’s director of information and analytics Max Jones, offered an apology for “any delays or confusion” caused by the review.
“While I recognise that this introduces some significant challenge for yourselves, I am sure you will agree that all of us need to work together to increase, rather than dissipate, public trust”, it added.
Several research bodies told HSJ that HSCIC had blocked them from gaining full access to NHS data such hospital episode statistics. This was essential for them to provide services and carry out research, they said.
One health figure familiar with the problem told HSJ: “I’ve heard a number of organisations now and a lot of people are very frustrated.”
Jennifer Dixon, chief executive of the Health Foundation, a research body, told HSJ that while she understood the need to bolster public trust, the matter needed resolving “asap”.
She said: “The [information centre] is responding as necessary to concerns around access to health data in an attempt to address public trust.
“Public confidence is key; however it’s also important for those engaged in this debate to recognise that any delay to releasing data for further use is a delay to improving the quality of patient care.”
She added that “unblocking the data pipeline asap is critical” in order to drive improvements spelt out by the Francis report, the Berwick report and other also to accelerate efficiency gains”.
The information centre said it had not stopped the flow of data but admitted that it had been slowed down.
“We understand that our current rigorous review of processes for data releases is having effects for some customers in terms of slowing down their access to data,” a spokeswoman said.
“While we continue to release data under data sharing agreements, we need to build public confidence in the scrupulous controls that we are putting in place. We ask for customer support while we complete this process.”