The Sharing of Personal Health Data – A Review of the Literature
The Data Futures Partnership Working Group commissioned Sapere to review issues and questions raised by the sharing of personal health data in general, and in particular the factors that influence people’s acceptance and approval of sharing the data – i.e. social licence issues.
A common issue raised within the literature is the individual and societal trade-off that arises with sharing and protecting personal health data. In order for individuals to be willing to give up some amount of privacy and control over their data, they ultimately need to decide if the benefits outweigh the costs.
It is clear that the debate around the issues of social licence within a health context is emerging – both within New Zealand and internationally.