SalusCoop will introduce us the progress of their initiative and we will discuss the donation and sharing of health data for research.
SalusCoop aims to help legitimize the right of citizens to control their own health records and promote a cooperative model of data governance. Their goal is to facilitate the exchange of data to accelerate research and innovation in the medical sector, putting data to the benefit of citizens collective.
The cooperative wants to help reconfigure the role of citizens in medical research and allow them to have a real influence on the decisions about the exchange of data and the configuration of the research agendas.
Advances in the field of information and communication technologies generate huge amounts of data, which establish the bases and encourage collective intelligence while promoting advances in different sectors. Health is one of the sectors that produces a greater volume of data, related to the health and the lifestyle of the citizens.
The future of our health depends in a significant way on the ability to combine, integrate and share personal health data from different sources. The way in which access and use of these data must be arbitrated is still an open question. Although European citizens have legally possession of their health information, they can often neither access their data nor control their use. These factors hinder innovation in the health sector and stop the investigation.
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