The power and efficiency of research using electronic health records is widely recognised. Scotland has some of the best health service data in the world and has a long tradition of using it to support patient care and undertake research. However technology, scientific discovery and expectations, of both efficiency and effectiveness in health research and in the way data are handled, are continually evolving.
In 2012, the Cabinet Secretary for Health and Wellbeing committed the eHealth Strategy Board and the Chief Scientist Office of the Scottish Government, to convene an advisory group, the Health Informatics Research Advisory Group (HIRAG), to provide advice on how Scotland should respond to the opportunities and challenges and to develop a strategy for Scotland so that it can continue to set an international standard for the secure use of routinely collected patient data for research. The Group, chaired by Professor Sir Lewis Ritchie and comprising experts from across the UK, produced a report setting out its findings and recommendations.
The group concluded that there needs to be strong working relationships between the emerging and existing infrastructure. Researchers must have better access to high quality sources of data and be able to work in settings where they can share expertise and new ideas. This in turn requires information governance to be proportionate and the processes of approval and assurance streamlined. Data controllers need to be assured that the new arrangements are secure. The NHS and Industry partners must be engaged to accelerate the translation and impact of health informatics research. Throughout, public confidence and trust need to be maintained through a two-way dialogue about uses of data.