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DELSA/GOV 3rd Health meeting - Franck VON LENNEP

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This presentation by Franck VON LENNEP was made at the 3rd Joint DELSA/GOV Health Meeting, Paris 24-25 April 2014. Find out more at www.oecd.org/gov/budgeting/3rdmeetingdelsagovnetworkfiscalsustainabilityofhealthsystems2014.htm

Published in: Government & Nonprofit
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DELSA/GOV 3rd Health meeting - Franck VON LENNEP

  1. 1. Ministère des finances et des comptes publics Ministère des affaires sociales et de la santé Ministère du travail, de l’emploi et du dialogue social 24/04/2014 1 OCDE – 25 avril 2014 L’accès aux données de santé Franck von Lennep, DREES
  2. 2. Ministère des finances et des comptes publics Ministère des affaires sociales et de la santé Ministère du travail, de l’emploi et du dialogue social 24/04/2014 2 Contexte • Stratégie du Gouvernement français en faveur de l’open data (voir le site data.gouv.fr piloté par Etalab, service du Premier ministre) • Attentes des utilisateurs : accès facilité aux données de santé • Spécificité française : une base de données médico-administratives (SNIIRAM-PMSI) ville-hôpital couvrant l’ensemble de la population française (65 millions de personnes) • Réflexions en cours depuis un an : rapport de Pierre-Louis Bras (remis à la ministre de la santé en octobre 2013), suivi de chantiers d’approfondissement
  3. 3. Ministère des finances et des comptes publics Ministère des affaires sociales et de la santé Ministère du travail, de l’emploi et du dialogue social 24/04/2014 3 Les enjeux de l’accès aux données de santé • Démocratie sanitaire • Autonomie des patients • Efficience de l’action publique • Recherche, innovation et compétitivité
  4. 4. Ministère des finances et des comptes publics Ministère des affaires sociales et de la santé Ministère du travail, de l’emploi et du dialogue social 24/04/2014 4 Le SNIIRAM-PMSI • Données de remboursement des patients en ville et à l’hôpital • Patients anonymisés (pas de nom, pas d’adresse précise, pas de NIR [identifiant individuel pour la sécurité sociale]) • Comporte pour chaque patient : les actes remboursés en ville (médecins, para-médicaux…), les codes des médicaments remboursés, les résumés de sortie à l’hôpital (public et privé)… • Les données sont chaînées pour chaque patient • Ne comporte pas les résultats d’examens (biologie, imagerie), ni les diagnostics en ville • Données sur les 3 dernières années + échantillon au 100e sur 20 ans
  5. 5. Ministère des finances et des comptes publics Ministère des affaires sociales et de la santé Ministère du travail, de l’emploi et du dialogue social 24/04/2014 5 Les utilisateurs • Les administrations, les agences sanitaires • Les chercheurs de la recherche publique • Les représentants des professionnels de santé et des établissements de santé • Les représentants des patients • Les fédérations d’organismes d’assurance maladie complémentaire
  6. 6. Ministère des finances et des comptes publics Ministère des affaires sociales et de la santé Ministère du travail, de l’emploi et du dialogue social 24/04/2014 6 Les objectifs des travaux en cours • Clarifier le concept de données réidentifiantes • Accroître le volume de données de santé en accès libre • Mieux sécuriser l’accès aux données réidentifiantes • Faciliter les appariements de données pour les chercheurs entre les données d’enquête et les données de remboursement • Cohérence avec les discussions en cours autour du règlement européen
  7. 7. Ministère des finances et des comptes publics Ministère des affaires sociales et de la santé Ministère du travail, de l’emploi et du dialogue social 24/04/2014 7 Le déroulement des travaux en cours - Une commission pluraliste, associant les parties prenantes, et discutant de la doctrine d’ensemble - Des travaux des administrations (techniques et juridiques), dans le contexte de la préparation des textes pour une prochaine loi de santé
  8. 8. Ministère des finances et des comptes publics Ministère des affaires sociales et de la santé Ministère du travail, de l’emploi et du dialogue social 24/04/2014 8 Données anonymes / données réidentifiantes (1) • Des données même anonymes peuvent présenter un risque de réidentification dès lors qu’on dispose d’informations par ailleurs sur un patient • La Constitution française protège le droit à la vie privée, dont la santé est un élément essentiel • L’accès aux données présentant un risque de réidentification ne peut donc pas être ouvert en open data • Il faut des procédures : sélection des demandeurs ; sécurité et traçabilité des accès + rôle de la Commission Nationale Informatique et Libertés
  9. 9. Ministère des finances et des comptes publics Ministère des affaires sociales et de la santé Ministère du travail, de l’emploi et du dialogue social 24/04/2014 9 Données anonymes / données réidentifiantes (2) • Travaux en cours avec l’INSEE et des chercheurs pour constituer des jeux de données anonymes par micro-agrégation de certaines variables • Travail lourd et innovant • Par ailleurs, réflexions en cours sur l’accès aux données présentant un risque de réidentification (notamment par un accès sécurisé à distance) • Question du modèle économique
  10. 10. Ministère des finances et des comptes publics Ministère des affaires sociales et de la santé Ministère du travail, de l’emploi et du dialogue social 24/04/2014 10 Conclusion • Une ambition au service des patients, de la santé publique et de la recherche • Nécessité d’organiser le débat public autour des enjeux mais aussi des risques • Continuer d’enrichir les bases de données et de développer les appariements

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