Linking and sharing routine health data for research

Author: Dr Charlotte Warren-Gash

In spite of the increasing drive towards digitisation and large investments in big data, the 'digital revolution' of personalised healthcare remains elusive.

As Brexit begins to exert its influence on Europe-wide plans for data harmonisation and sharing, our report presents new recommendations for policy makers on improving the linkage and sharing of routine health data for research in England.

Each individual visit to the doctor, hospital or clinic generates a large amount of potentially useful data - data which could provide important insights for health research. But research conducted using such de-identified 'routine data' is subject to challenges and hurdles, ranging from the technical to the political, limiting our ability to make the most of this data.

In our report we urge policy makers, and organisations who have key roles in health data use including NHS Digital and Public Health England, to take the lead in ensuring that England is equipped to maximise the societal benefits of research using routine health data.

The recommendations are drawn from a series of interviews with experienced data users on how routine data is currently used, their views on how it could help medical research, and the complex issues of using such de-identified data, the barriers and the ways to improve data sharing for research.

The report was preceded by a briefing note published in June this year.

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