Scotland has linked health records for its entire population of 5 million people since the 1970s, and a new research centre aims to unlock that data to answer pressing medical questions. This matters because the UK, and Scotland in particular, holds some of the world’s best health service data. Every person registered with a GP in Scotland has a unique identifying number from the Community Health Index, which allows researchers to link hospital records, prescriptions, genetic information, and environmental data over decades. This system has already produced concrete results: researchers used routine data to show that Scotland’s smoking ban in public places reduced emergency asthma admissions in children by 18% per year, and have tracked the long-term safety of common drugs for diabetes and heart disease. If the centre succeeds, it will make far better use of this existing infrastructure to answer questions about how to run health services efficiently, how genes and environment interact to cause disease, and how to test new medicines more safely. The centre will also train the next generation of data scientists and consult the public to maintain trust and confidentiality. The result could be substantial improvements in the nation’s health without collecting any new data—just by analysing what is already there.
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The United Kingdom has some of the best health service data in the world. This is particularly true in Scotland, where a simple and far-sighted decision in the 1970's means that every person registered with a general practitioner (GP) in Scotland (population 5 million) is allocated a unique identifying number from a centrally maintained register called the Community Health Index (CHI). It is the key to linking health data to improve communication and the quality of care that the NHS delivers to patients. It is also vital for health research that aims to improve our understanding of how to run health services efficiently; how to treat patients more effectively; how the intimate links between our genetic make-up and the environment interact to cause disease, and how to test the safety and benefit of new medicines more effectively. We have a track record of doing this; for example, using routine information, researchers in Scotland showed that the introduction of the smoking ban in public places resulted in a reduction in emergency admissions for asthma in children aged 5-15 by 18% per annum; and have shown the long term safety, often using information collected over decades, of drugs for the treatment of many common diseases such as diabetes and heart disease. The aim of the Scottish eHealth Research Centre is to build upon these existing strengths, by bringing together a group of researchers across Scotland and the UK in a joined-up strategy. This includes experts in science, public health, clinical trials, the law, safety of medicines, the law, social science, geography and the environment. Our aim is to make better use of the wealth of good quality, routinely collected health data and other datasets, to answer some of the pressing questions facing 21st Century medicine. The number one priority if we are to do this is to maintain confidentiality and privacy by implementing the highest standards of security and governance to maintain public trust. Our Centre will therefore not only perform cutting edge research and train the next generation of researches and computer scientists that we will require to analyse these large datasets, but will also consult widely with the public to develop an acceptable approach to the use of electronic patient records. Our Centre aims to demonstrate enormous benefit for clinical, genetic, public health and health services research whilst deploying the highest standards of respect for confidentiality of information. Better use of routinely collected data, will result in substantial improvements in the health of the nation. The Centre will not only produce new knowledge but also increase the health and wealth of society.
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