The life cycle of our health data
As part of its health democracy programme, Institut Curie's SIRIC organized a series of online seminars every Tuesday in October 2021 to give you a better understanding of health data and its use.
To accompany these meetings, we offer you a diagram on the life cycle of our health data. This admittedly imperfect vision has the advantage of helping to better understand the diversity of issues raised by the use of data, whether ethical, legal, technical or economic.
| DATA SOURCES |
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Our health data are generated in the context of care (hospital pathways, medical and administrative structures, etc.) and research (clinical trials, studies, etc.) but not only. More and more, our connected objects collect information (e.g. a connected watch to track the number of steps or a connected scale) which can sometimes also constitute health data.
| DIGITIZATION AND AGGREGATION OF DATA |
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The data generated in the context of care or research are digitized (recorded in electronic format). They are protected by the public health code and the law on information technology and freedom, but also more recently by the General Data Protection Regulation. The law protects us by making it compulsory to sign a consent form for the use of data outside a care setting. It also gives us rights, for example by allowing us to retrieve our data in a readable format, this is the right to portability.
The collection of data from a large number of people from healthcare, research or the "internet of things " makes up "Big Data", i.e. meta-megadata. The data can be anonymized (impossibility of going back to the person from whom the data originated) or pseudonymized (use of a code, held by a referent and making it possible to go back to the person from whom the data originated).
This aggregation requires good management of the quality and interoperability (technical, semantic and syntactic) of the data, but also of the costs in terms of storage and calculation. These technical aspects are essential!
Once aggregated, the data is no longer necessarily held by the person or organization that generated it. Their control is more complex. The data becomes permanent and can be disseminated widely, but above all it allows new information to be created.
| USE OF DATA OUTSIDE OF CARE |
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By aggregating data, the aim is to create very large cohorts at national or international level. The change of scale provides a new research tool, essential for example for the study of rare diseases or for prevention that is impossible at the level of a hospital or even a country. Researchers analyze the data to generate new research hypotheses with the ultimate aim of improving care. This work, largely based on artificial intelligence, requires a strengthened and adapted legislative framework.
In the end, our data are precious, they create value at the scientific and economic level, but above all they allow us to improve care. It is beneficial for individuals but it is also a common good.
Being aware of the complexity of the issues raised by the use of data helps to break free from simplistic postures between "protectionism" and "uncontrolled use". We hope that this series of seminars will make you want to take ownership of these issues and become an actor in the use of your health data.
