New regulations on how patient identifiable data can be provided to commissioners should be in place by the end of 2014, NHS England and the Health and Social Care Information Centre have said.
Representatives from both organisations discussed the contentious issue at the Health + Care conference in London this morning.
The Health and Social Care Act, passed in 2012, failed to pass some key data handling responsibilities from primary care trusts to the new commissioning organisations it established.
Commissioners and companies working with them have said that the Act makes it more difficult to obtain the information they need to deal with planning and population health issues.
But Dame Dame Fiona Caldicott’s second review of information governance confirmed that non-identifiable information should be used.
Ming Tang, NHS England’s director for data and information management services, said it has been working closely with the Department of Health on changes to the regulations for data management.
Tang said the work has included a focus on clarifying the legal status of ‘accredited safe havens’ – the organisations from which commissioners can access some patient identifiable data.
She said a public consultation document on accredited safe havens will be released soon to provide a better understanding of which organisations will qualify, their purpose, and the restrictions they will face.
Martin Dennys, the HSCIC's director of data services for commissioners, said the safe havens will have “significant controls” that they need to meet, including explaining to patients what identifiable information is being shared about them and why.
Tang said new data access regulations should be passed through Parliament by the end of the year, while Denny said there will be a “transition period” to allow organisations to meet the safe haven standards.
Tang acknowledged the current solution, using section 251 of the Health Act to give commissioners temporary access to identifiable data for functions like risk stratification and invoice management is “not totally satisfactory”.
She said the exemption for risk stratification is set to run out in July, with the other exemptions expiring in October, and NHS England has applied to the Health Research Authority's Confidentiality Advisory Group for an extension to April next year.
Tang said the difficulties that commissioners have had in accessing data are largely due to problems with the transition to the new commissioning arrangements.
“I think calling it [the data flow] treacle is kind; in many places it just stopped because of the lack of clarity. Because the transition period was such a flawed one, the issues were not thought through in a way that would benefit data management.”
Tang and Dennys both identified data quality as an issue that needs to be addressed, particularly standardisation of the data sets.
“There is a huge amount of data out there that does not have standards: there are huge issues around the quality of the data, such as the identifiers in it or the coding,” Dennys said.
“We're trying to go from where we are now to a point where the data goes through in a timely manner, but is also standardised in terms of how it comes into the HSCIC.”
Standardising the data would make it more reliable for linking between primary care and secondary care and allow greater automation of the quality assurance process, he said.
In a speech at the conference yesterday, HSCIC chairman Kingsley Manning said the NHS needs to earn back the trust of its patients in the way it handles data, and warned that a large degree of transparency will be required for commissioning organisations receiving data.