The apt use of data for health policies and innovation can enhance access and outcomes. However, the prevalent trend of exploiting personal data collected through digital technologies as economic assets poses risks of surveillance, discrimination, and exploitation.
This policy brief submitted to the T20, anchored by Idec, Brasil and co-authored by IT for Change, provides elements for a health data governance policy aimed at ensuring equitable distribution of economic and health benefits derived from the use of data, while also safeguarding the universal right to health. The recommendations include: how to empower individuals and communities to control their health data; how to foster digital health strategies at the national level; avoiding the enclosure of data (e.g. by IP) by private entities; AI and lack of algorithmic transparency; how recognizing health data as public good can be translated into good policies; scope for data sharing for commercial purposes; and the issue of consent and secondary use of data in digital health.
Read the policy brief here.