Our Business Development Manager Dr Anthony Morfa will be attending The use of Big Data for health research: building and maintaining Social Licence reservation seminar.
In 2018, 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 first securing a social licence.’ She noted that a similar scheme in the United Kingdom, care.data, ‘collapsed spectacularly’ and it is significant 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 benefits 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 benefit 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?
Carolyn is a Senior Lecturer at Macquarie Law School where she teaches and researches in the area of public law, with a focus on human rights and open government.
Carolyn regularly provides expert advice on privacy, access to information and the handling of personal information to government and non-government organisations. She is currently engaged in a major project examining the ethics, law and policy of sharing personal information in the hands of government for research.