The new chair of the National Information Governance Board for Health and Social Care has criticised plans to make it easier for researchers to access patient information.
According to the Guardian, Harry Cayton has described plans to give researchers access to patient information to recruit for medical trials as “ethically unacceptable.” The proposals are included in the NHS constitution, on which public consultation closed last month.
Cayton is quoted as saying the plans would be a “backward step” and alternative ways of identifying appropriate patients for trials should be found. Medical researchers currently ask GPs and other clinicians to identify patients who might be suitable tof trials, and they write to the patients concerned.
However, this was identified as a problem in a report by information commissioner Richard Thomas and Wellcome Trust director Mark Walport in a report on data sharing earlier this year. Overall, the report was strongly in favour of a “presumed consent” approach to using patient information for research.
The NIGB comes into force in December, after almost a year of preparation, and will have a very wide remit. It is the successor to both the Care Record Development Board and the Patient Information Advisory Group and will for the first time cover both health and social care.
In an interview with E-Health Insider, Cayton made it clear that he wanted the board to change public perceptions about the use of individual data. He said the key to this would be to build a culture in which the public has confidence in consent and confidentiality mechanisms.
“Confidentiality is not enough,” he said. “The first priority is around making sure that the public has a better understanding of how their data is used. The public will need to be confident that the requirements of consent are treated as importantly as confidentiality.”
Cayton also argued that the new board was an important step. “I think it’s the first time there has been a single point for discussion, debate and arbitration of governance issues around e-health and social care issues,” he said.
“We also have observer status on the boards on Department of Children, Schools and Families and Ministry of Defence health records project, so it’s a very wide remit.”
NHS bodies will also have a new statutory duty to take notice of advice and standards from NIGB. “Obviously we’ll operate at high level, give advice and set standards, but we can ask people to report back to us on what they have done,” Cayton explained. “This is a a reasonably strong power as can publish a report or alert the Secretary of State.”
He stressed that the board, although it has its website temporarily housed on the NHS Connecting for Health site, is fully independent, with a direct report to the health secretary.
However, there will be a relatively small secretariat attached to the new body – and Cayton himself will have to juggle chairing the board with his day job as chief executive of the Council for Healthcare Regulatory Excellence.
Work carried out by NIGB in shadow form has included looking at childrens records, the single assessment process in social care “and how people can correct their records if there is a dispute about what is contained in it.”
Cayton told EHI that the board will aim to be as transparant as possible and “will publish all of our papers and a note of meeting with headlines within five days.”