A new publication by CRI researcher Bastian Greshake Tzovaras and his collaborators from the USA and Australia has just been published in the journal Data & Policy! This article shows how the emergence of databases containing individual health data requires new methodologies for governing these data, shifting the focus from the individual to the collective.
The amount of health data collected on individuals continues to grow, both inside and outside the healthcare system - for example, 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 just-published article explores four of these platforms as case studies that offer new ways of using health data - including the ecosystem Open Humans which is co-directed by Bastian Greshake Tzovaras, Research Associate at CRI. Together, the case studies provide an insight into how to move from institutional to individual data governance and, furthermore, what collective data governance might look like.
The article is available free of charge at the following address : https://www.cambridge.org/core/journals/data-and-policy/article/emerging-health-data-platforms-from-individual-control-to-collective-data-governance/C2FABA49744B674D157DC5E09E15DDCD
