Charter for Safe Havens in Scotland: Handling Unconsented Data from National Health Service Patient Records to Support Research and Statistics.

Purpose

The information held in electronic patient health records offers enormous opportunities for research that can lead to more effective, safer health services and treatments, and better understanding and new insights into the causes and development of diseases. Whilst the public are generally very supportive of the aims of health informatics research (research using electronic health records), there is significant public concern about how the data in their health records might be used, who has access to these data, and that as a result of this research their privacy and confidentiality may be compromised.

In order to address these concerns and support health informatics research, a robust governance framework has been developed to ensure that health informatics research in Scotland is ethical, in the public interest, scientifically sound, and patient identity and privacy are appropriately protected. ‘Safe Havens’ are a crucial element of this framework in order to protect identity and privacy and facilitate health informatics research.

This charter sets out the agreed principles and standards for the routine operation of Safe Havens in Scotland where data from electronic National Health Service (NHS) patient records can be processed, linked with other data and analysed to support research when it is not practicable to obtain individual patient consent while protecting patient identity and privacy. It also describes, at a high level, how Safe Havens will work together across Scotland on collaborative research projects as part of a federated network.