Evidence Brief by NSW Government: “Social licence, otherwise referred to as social licence to operate, refers to an approval or consensus from the society members or the community for the users, either as a public or private enterprise or individual, to use their health data as desired or accepted under certain conditions. Social licence is a dynamic and fluid concept and is subject to change over time often influenced by societal and contextual factors.
The social licence is usually indicated through ongoing engagement and negotiations with the public and is not a contract with strict terms and conditions. It is, rather, a moral and ethical responsibility assumed by the data users based on trust and legitimacy, It supplements the techno-legal mechanisms to regulate the use of data.
For example, through public engagement, certain values and principles can emerge as pertinent to public support for using their data. Similarly, the public may view certain activities relating to their data use as acceptable and beneficial, implying their permission for certain activities or usecase scenarios. Internationally, although not always explicitly referred to as a social licence, the most common approach to establishing public trust and support and identifying common grounds or agreements on acceptable practices for use of data is through public engagement. Engagement methods and mechanisms for gaining public perspectives vary across countries (Table 1).
− Canada – Health Data Research Network Canada reports on social licence for uses of health data, based on deliberative discussions with 20 experienced public and patient advisors. The output is a list of agreements and disagreements on what uses and users of health data have social licence.
− New Zealand – In 2022, the Ministry of Health commissioned a survey on public perceptions on use of personal health information. This report identified conditions under which the public supports the re-use of their data…(More)”.