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The document, Informing shared clinical care, was written on behalf of CfH by the Royal College of General Practitioners informatics group, with the aim of taking the "first steps" in developing professional guidance about the use of shared electronic patient records (SEPR) in primary care.
It says that although professional guidance consistently emphasises the need to obtain consent and inform patients about how their health data may be used, there is no standard approach to this.
This is particularly important because there is no single point of access where patients can see their detailed electronic health records, and there is little patient or professional experience of the SEPR, so that custom and practice has not yet emerged.
"We believe it is essential to engage patients as full partners in these sharing decisions," says the report, "to inform professional practice and maintain patient confidence in both health professionals and the information systems used to support the care process."
This is one of 16 principles set out in the document, which also recommends:
- joint guidance on record sharing should be produced and maintained by professional regulatory bodies and representative organisations to ensure record quality, consistency and clarity;
- health professionals have an individual responsibility for maintaining and assuring SEPR data quality and they should be educated and trained to meet their legal, ethical and professional responsibilities;
- governance arrangements should be in place to deal with errors and differences of opinion in SEPR systems and, generally, errors in the SEPR should be corrected by the originator;
- SEPR systems should be able to store and present information in styles that meet the particular user's needs, so as to minimise the risk of a health professional missing data because it is presented in an unfamiliar way, or because it is labelled differently;
- the information commissioner should be asked to clarify how requirements for a data controller and other obligations under data protection legislation should be met in the context of a SEPR.
The report suggests that the NHS's Care Record Guarantee should provide a form of words that health professionals could use to advise patients about sharing decisions.
CfH said the document will provide key points of reference as the health service moves towards patient centred records. "We recognise that no single report can be expected to provide all the answers to such wide ranging and challenging questions," said the agency. "However by informing the ongoing debate… it can make a significant contribution. Confronting the issues around 'sharing' head on is the only way to achieve high quality, patient centred electronic clinical records."
The Royal College's informatics group consulted more than 30 different professionals during its research, which CfH said will be assessed by NHS Connecting for Health Clinical Safety and will contribute to revised requirements for system design and delivery.
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