A new publication by CRI Research Fellow Bastian Greshake Tzovaras and his collaborators from the US and Australia has just been published in the journal Data & Policy! The paper presents how the emergence of databases with individual health data requires novel methodologies to govern those data, shifting the focus from the individual to the collective.
The amount of health data collected about individuals keeps growing, both inside the the healthcare system as well as outside of it – e.g. through the use of wearable devices or personal genetic testing. While these databases have the potential to transform healthcare and research, there remains an ongoing tension between data protection for the individual and the public good. In response to these tensions, there are a number of experimental approaches that aim to give greater control to individuals and communities.
The now published paper explores four of those platforms as case studies that provide new ways for health data to be used - including the Open Humans ecosystem that is co-led by CRI Research Fellow Bastian Greshake Tzovaras. Together, the case studies provide insight into how one can shift from institutional to individual data governance and furthermore how collective data governance can look like.
The article is freely available at https://www.cambridge.org/core/journals/data-and-policy/article/emerging-health-data-platforms-from-individual-control-to-collective-data-governance/C2FABA49744B674D157DC5E09E15DDCD