The Council’s Working Party on biological and health data held its first fact-finding meeting on Friday 19 July, marking a shift from the initial scoping phase of the project into the evidence gathering period. During the meeting, members of the Working Party heard a range of views from the following guests working in research and data processing:
  • Francine Bennett of Mastodon C, a big data consulting company;

  • Fiona Cunningham of the European Bioinformatics Institute;

  • Tim Hubbard of the Wellcome Trust Sanger Institute; and

  • Martin Landray, a researcher and consultant physician at the University of Oxford.

The purpose of the meeting was to explore the meaning of the concept ‘big data’: how it is used and what expectations it raises in the context of research and clinical practice in the fields of health and biology. It also looked at how ‘big data’ has been represented in the media. The important points arising from the discussions included:
  • ‘Big data’ is partly a marketing term, but is a useful way to label a qualitative shift in the way data are used; it allows people to do the things they have always done but do them better and also gives new opportunities (such as linking data from very diverse sources)

  • The tools and methods of big data are, for the most part, new to biology

  • There are few industry guidelines in the area

  • Regulatory systems are often based on the purpose to which the data collected will be put – this is becoming ineffective as the purposes are merging (treatment and research, for example) or becoming irrelevant (because data sets are large enough to draw inferences about ostensibly unrelated issues)

  • The term ‘big data’ is currently used only infrequently in the UK-based lay press. Most coverage is positive, but there are debates about privacy

In the coming months, this Working Party will continue gathering evidence about the linking and uses of health and biological data, particularly about possible solutions to privacy concerns (who should have access to the data? How should it be stored? Are ‘safe havens’ effective?) and market economics (how are health data monetised? What are the economic drivers for linking data?). The Working Party will also be releasing a consultation later in the year, which will be open to everyone.

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