Health Data Talk Series
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WHAT ARE HEALTH DATA?
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Health data refers to personal information (also called personal data) that relates to the health status of a person. This includes medical data (diagnosis, doctor referrals and prescriptions, medical interventions, medical examination reports, laboratory tests, radiographs, data acquired or processed in the context of health research or policy making, such as disease registries or data from registries with side effects of medicinal products or medical devices, etc.), patient-reported data (health results, health consequences, subjective well-being, treatment adherence, sick leave and back-to-work, …) administrative and financial information about health (including invoices for healthcare services and medical certificates for sick leave management, etc.), but also determinants of health (social, behavioral, environmental).
Personal data in laymen’s terms: personal data is information about a particular natural person that allows, or could allow identifying the person. It is important to distinguish between identifiable data (even if it is key coded) and data that is rendered completely anonymous, as the Regulation applies to the former, and not the later (Recital 36). It may be any information relating to an individual, whether it relates to his or her private, professional or public life. To be covered by the Regulation the data need to be collected and used by someone else (a person or legal entity).
(Source : European Patients Forum : Data protection guide for patient organizations)The legal definition under GDPR: According to the EU General Data Protection personal data is “any information relating to an identified or identifiable natural person (...); an identifiable natural person is one who can be identified, directly or indirectly, in particular by reference to an identifier such as a name, an identification number, location data, an online identifier or to one or more factors specific to the physical, physiological, genetic, mental, economic, cultural or social identity of that natural person” (Article 4(1) GDPR).
(Source European Commission (2022): A European Health Data Space: harnessing the power of health data for people, patients and innovation) -
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Watch the Dutch video
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Watch the French video
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