Contributors: Institut du Cerveau = Paris Brain Institute (ICM); Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP)-Institut National de la Santé et de la Recherche Médicale (INSERM)-CHU Pitié-Salpêtrière AP-HP; Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP)-Sorbonne Université (SU)-Sorbonne Université (SU)-Sorbonne Université (SU)-Centre National de la Recherche Scientifique (CNRS); Roche France S.A.S., 4 cours de l'île Seguin, Boulogne-Billancourt, France (Roche); Limsi-CNRS, campus universitaire bâtiment, 508, rue John-von-Neumann, Orsay, France (LIMSI); Centre Hospitalier Universitaire La Cavale Blanche, Brest, France (CHU Brest); INSERM, UMR1027, Toulouse, France (UMR1027); Institut Curie (Curie); CHU Tenon AP-HP; Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP)-Sorbonne Université (SU); French Health Data Hub; Paris Brain Institute-ICM, Inserm U 1127, CNRS UMR 7225, Sorbonne University, Paris, France
نبذة مختصرة : As the digitalisation of the healthcare system becomes a reality in developed countries, the availability of large volumes of health data is raising stakeholders' expectations, sometimes excessively, and concerns, sometimes groundlessly. A review of the benefits that can legitimately be expected from exploiting the available data is proposed, while considering the adverse effects that have already been documented or can legitimately be anticipated, before determining where the benefit/risk balance stands. While the current criteria place the emphasis on the absolute protection of privacy, which hinders or delays many highly relevant studies, we propose that the benefit/risk balance should henceforth form the basis for decisions to authorise the use of health data for research purposes.Many benefits are expected from providing access to this data :(1) Facilitating the epidemiological surveillance of major diseases, upon which many public health decisions are based.(2) Enabling the measurement of healthcare efficacy and the detection of local or regional situations that deviate significantly from the mean.(3) Facilitating the monitoring of changes in practices over time and their impact.(4) Helping to document the positive and negative effects of innovations introduced as a result of changes in practices, be they medicinal, technical or organisational.(5) Providing information about patients' access to healthcare services, allowing rates and delays to be calculated and cross-referenced with geographical variables and socio-economic data in order to identify inequalities, effective and ineffective strategies, and determine which areas should be prioritised for improvement.(6) Contributing directly to improving knowledge – an essential step towards improving practices and designing effective and protective public policies.(7) Playing an essential role in developing the uses of artificial intelligence, based on new, high-quality algorithms which can be trained and tested on representative populations, which is not ...
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