The Use of Big Data for Health Research: Building and Maintaining Social Licence

Adams, C. (Speaker)

Activity: Talk or presentationInvited talk

Description

In , Julia Powles wrote in relation to My Health Record that it is staggering that an
Australian public service has moved to centralise its citizens’ ‘most intimate and sensitive
information without rst securing a social licence.’ She noted that a similar scheme in the
United Kingdom, care.data, ‘collapsed spectacularly’ and it is signicant to note that the failure
of care.data has also been linked to failure to build and maintain social licence.
Our project is concerned with a related issue, that is, how to build and maintain social licence
to support the use of administrative data for health research. Governments routinely collect
health data, such as births, deaths, and hospital admissions, in order to manage and fund
health services. The value of this resource for health research is expanding rapidly with big data
analytics. Impressive benets can be achieved where researchers have access to the data for
analysis and, in particular, data linkage. Our concern is that a lack of social licence for such
research has the potential to undermine community support for the use of personal health
information for research. In general, governments are supportive of allowing access to data for
research, however, while legislation can authorise the use of this kind of data for the benet of
all, public acceptance does not necessarily follow.
Health researchers need a licence, not granted to other members of society, to access and use
individuals’ health data, often without consent, for the purposes of their research. Who is
responsible for building this social licence? How is social licence built and how is it maintained?
Period5 Mar 2019
Held atAustralian Institute of Health Innovation
Degree of RecognitionLocal