NHS Connecting for Health has launched a public consultation on the wider use of patient information held in the Secondary Uses Service that is being created as part of the NHS Care Records Service.
The 12-week consultation run by Tribal Consulting will collect patient views on who should have access to data, what purposes it should be used for apart from direct patient care, who should control access and what consent options there should be for patients.
Tomorrow, CfH is expected to announce a revised consent model for both summary and detailed care records that will mean patients giving explicit consent to their use.
However, at a press conference to launch the SUS consultation, Professor Michael Thick said people would not give explicit consent to their information being included in the new service, which will collect data automatically from the NHS CRS, Choose and Book, and other national systems.
He also indicated that patients would not be able to opt out, although they will be able to apply under section 10 of the Data Protection Act to prevent use of data that would cause them distress.
Professor Thick, chief clinical officer for CfH, admitted that the persistent stories of data leaks by public sector organisations had made issues of data use and confidentiality extremely sensitive.
“We are launching this consultation because we are well aware that large organisations have a habit of leaking data at the moment and that will impact on patient views,” he said. “Also, we will never have a stable state on this one. We have to keep making sure that we have the right controls in place.”
People with a direct interest in obtaining data for clinical research attended the press conference. Julie Clifton, CfH’s acting director of care record development, told journalists that when she had breast cancer, she had “been very aware that every step of my treatment was informed by research.”
Professor Alex Markham, senior responsible owner for the research capability programme within which SUS sits, and chief executive of Cancer Research UK, talked about a doctor’s joint duties of confidentiality and providing the best possible care based on research, and said the programme would seek to reconcile the two.
“The whole purpose of the programme is to reconcile the absolute need for confidentiality with the need for research,” he said. “Its purpose is to take data in confidence, to render it anonymous, and then to use it for research.”
CfH materials prepared for the launch say, however, that while patient identifiers will “normally” be removed from the information “sometimes” these will be required. SUS will also be used for planning and management.
The launch indicated that CfH is pursuing the idea of an “information custodian” to oversee the use of patient data. This was floated earlier this year in a report by the Information Commissioner and the Wellcome Trust that also argued patients should be assumed to have given “implied consent” to their data being used for research.
The consultation will include an online questionnaire, workshops and “town hall meetings” at eight cities around the country. The consultation will lead to a published report and will also inform the business case for the research capability programme.
NHS Connecting for Health’s dedicated SUS consultation site