Phase 2 – Propositions pour un portail de transparence
Jusqu’à maintenant, les travaux de recherche réalisés durant cette phase ont révélé que, dans un contexte d’accès aux données de santé et à leur utilisation en recherche:
- une communication avec un niveau suffisant de transparence contribue positivement à l’acceptabilité sociale ainsi qu’au processus de consentement libre et éclairé, tandis qu’un niveau insuffisant ou excessif de transparence provoquait des impacts négatifs.
- la population a des attentes importantes tant au niveau des informations qu’elle veut connaitre que de la façon, du moment ou des conditions où elle veut les recevoir.
Un portail de transparence est un portail numérique qui permet à une personne de prendre connaissance de plusieurs types d’information par rapport à l’utilisation de ses données. Cela pourrait inclure des informations de nature générale sur la recherche avec des données de santé. Cela pourrait aussi permettre à une personne de connaître les projets de recherche qui ont utilisé ses données de santé et des raisons qui motivent leur utilisation. Ce portail pourrait aussi l’informer des retombées pratiques de ces projets de recherche.
Contexte de recherche
Les travaux de recherche réalisés lors de la phase 1 ont permis de cerner l’importance de l’information reçue par une personne dans sa décision de consentir ou non à l’utilisation en recherche de ses données de santé. Le sondage (Cumyn et coll., 2024) a illustré que la transparence en elle-même augmente l’acceptabilité sociale (en sus du consentement).
Ils ont également révélé que l’acceptabilité sociale relative à cette utilisation des données de santé passe par une meilleure compréhension, mais aussi par une transparence accrue des accès à ces données et de leurs utilisations.
Actuellement, la population du Québec est peu ou mal informée de l’utilisation faite en recherche de ses données de santé puisqu’il n’existe pas de mécanismes centralisés où elle peut obtenir de l’information sur l’accès et les utilisations secondaires de ces données.
Dans la mesure où la transparence est essentielle à l’obtention d’un consentement éclairé, il faut prévoir des mécanismes de transparence qui s’intégreront au modèle de métaconsentement compatible avec les SSA. Pour y arriver, il faut d’abord identifier les besoins d’informations et les attentes des différents groupes et communautés de la société quant à l’utilisation en recherche de leurs données de santé. (Cumyn et coll., 2024)
Objectifs de recherche
Afin d’être en mesure de formuler des recommandations adéquates à l’égard d’un portail de transparence, les objectifs suivants ont été définis dans le cadre de la deuxième phase du programme de recherche :
OBJECTIF 1
Identifier :
- les informations génériques (sur l’utilisation des données en général) et spécifiques (sur l’utilisation des données de l’individu) que le public souhaite connaitre afin de faire des choix éclairés quant à l’utilisation en recherche des données de santé;
- les modalités de transmissions de ces informations, c’est-à-dire de quelles façons les informations doivent être transmises et à quelles conditions.
OBJECTIF 2
Déterminer le niveau d’acceptabilité et de compréhension des citoyennes et citoyens envers le modèle de consentement jugé comme étant le plus approprié dans le contexte d’utilisation décrit précédemment.
OBJECTIF 3
Émettre des recommandations favorisant l’autonomie et la transparence afin de guider les décisionnaires responsables de faire évoluer, au Québec, les cadres éthiques et juridiques actuels entourant l’accès aux données de santé et leur utilisation en recherche.
Méthodologie
Par le biais d’une revue de littérature, identifier les opinions et les recommandations des différentes parties prenantes sur les informations que les personnes soignées et le public souhaitent connaitre quant à l’utilisation en recherche de leurs données de santé, ainsi que les modalités de transmission de ces informations, c’est-à-dire les façons dont ces informations doivent être transmises et à quelles conditions.
En second lieu, effectuer une analyse secondaire des publications sélectionnées pour la revue de littérature afin de caractériser la transparence dans le contexte d’une communication à l’égard de l’accès aux données de santé et à leur utilisation en recherche. Identifier également les facteurs influençant positivement ou négativement la transparence et les conséquences que cela engendre.
L’équipe CLARET réalise une étude à devis mixte séquentiel constituée d’un sondage, de groupes de discussion et d’entrevues individuelles auprès de personnes citoyennes et de personnes issues de groupes marginalisés, afin d’identifier les besoins de transparence au Québec entourant l’utilisation en recherche des données de santé.
À VENIR
En se basant sur les résultats obtenus précédemment, formuler des recommandations en lien avec un portail de transparence destiné à la population dans un contexte de l’accès à ses données de santé et à leur utilisation en recherche. La transmission de ces recommandations pourra s’effectuer sous la forme d’un rapport, d’un mémoire ou encore, d’échanges avec des personnes expertes du domaine.
Conclusions actuelles
Les besoins de la population en matière de transparence
La revue de littérature a permis d’identifier les besoins des personnes soignées et du public en matière de transparence dans le cadre de l’utilisation en recherche de leurs données de santé :
Les niveaux de transparence et leurs impacts
La figure suivante résume, pour chaque niveau de transparence, les impacts observés sur la société et sur l’individu quant à l’acceptabilité sociale des utilisations secondaires des données de santé.
Retombées scientifiques
Publications scientifiques
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Conférences et présentations
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2601
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Bilodeau E (2025) Uitilisations secondaires de données de santé : impacts de la transparence Cite
Cumyn A, Ethier J-F (2022) Enjeux autour de l'utilisation secondaire des données de santé et pistes de solution Cite
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2298129
CLARET_AFFICHE_PHASE2
1
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Lévesque F, Cumyn A, Ménard J-F, Dault R, Barton A, Ethier J-F (2022) CLARET Transparence - Vers un portail citoyen de transparence sur l'accès et l'utilisation secondaire des données de santé Cite
Chapitres de livres
2298129
CLARET_LIVRE_PHASE2
1
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Ménard J-F (2024) La protection, l'utilisation et la valorisation des données de santé au sein du réseau de la santé et des services sociaux au Québec à l'aube d'une réforme du système de santé. In: Bloch L, Castaing C (eds) Les enjeux du numérique en santé : intelligence, artificielle, données de santé, patient, LEH Édition. Bordeaux, France Cite
Ménard J-F, Cumyn A, Bilodeau E, Dault R, Ethier J-F (2024) De la compréhension des attentes citoyennes à l’opérationnalisation d’un nouveau cadre juridique : le cas de l’utilisation des renseignements de santé en recherche au Québec [soumis]. In: De la donnée de santé aux systèmes d’IA en santé, Observatoire international sur les impacts sociétaux de l’IA et du numérique (Obvia). Presses de l’Université Laval Cite
Tables rondes et colloques
- L’IA responsable et explicable en santé, quel cadre et quelle réglementation. Attache ta TUQ Sherbrooke (Tour des Universités Québécoises). 29 mai 2024, Université de Sherbrooke. Sherbrooke, Canada. Panéliste invitée : Annabelle Cumyn
- Le partenariat dans la recherche. Forum Coconstruire la santé. 28 mai 2024. Sherbrooke, Canada. Panéliste invitée : Annabelle Cumyn.
- Nos données, notre santé : informer et engager les patients et citoyens dans l’utilisation des données de santé en oncologie. 13 mai 2024. ACFAS, Ottawa, Canada. Panéliste invitée : Annabelle Cumyn.
- Les impacts des nouvelles lois et politiques de données sur la recherche en santé, CRCHUS, Sherbrooke, Canada. 1 novembre 2023. Panéliste invitée : Annabelle Cumyn.
- Table-ronde intersectorielle autour de la gouvernance numérique citoyenne. ACFAS- Atelier pratique autour de l’acceptabilité sociale de l’utilisation des données personnelles en recherche, Montréal, Canada. 8 mai 2023.
Médias
- Dugal, M. (animateur) et Desjardins, C. (réalisatrice). (2025). Comment faire preuve de transparence et mieux valoriser nos données de santé. Dans Moteur de recherche. Société Radio-Canada. https://ici.radio-canada.ca/ohdio/premiere/emissions/moteur-de-recherche/segments/rattrapage/2040734/comment-faire-preuve-transparence-et-mieux-valoriser-nos-donnees-en-sante
- Ethier JF, Cumyn A, Ménard JF. Plus de transparence pour un consentement éclairé | Faculté de médecine et des sciences de la santé de l’Université de Sherbrooke [Internet]. Disponible à : https://www.usherbrooke.ca/medecine/actualites/nouvelles/details/53919
Photos
Les activités de recherche de la phase 2 ont été diversifiées et enrichissantes, comme en témoignent ces photos.
Pique-nique scientifique 2024 au parc Jacques-Cartier de Sherbrooke
Alphare, un collaborateur précieux
