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Data collected during a hospital stay or a medical, blood glucose values measured by a connected blood glucose meter, or information collected during a home healthcare service are all fulfilling their primary role, i.e. enabling or facilitating care. Furthermore, these health data (also names “health and social services information” by the Quebec government in the Act respecting health and social services information), which are collected by healthcare establishments and by individuals themselves, can be reused to contribute to research and the improvement of care practices. They are also essential to the operation of learning health systems (LHSs) to advance research more rapidly and improve care and practice. Currently, health data can be used for research purposes by researchers who have obtained individual consent specific to each research project or consent delegated to an authorized third party (such as the Commission d’accès à l’information or the directors of professional services of healthcare establishments) .
Health data is defined by the Quebec government as any personal information about a person’s current or past physical or mental health that reveals information about their state of health.
A learning healthcare system is a cycle-based approach designed to reuse the health data naturally produced during the provision of care and the citizen activities on a large scale, in order to discover new ways of doing things, and then integrate them into current activities. These new approaches generate new data that can form the basis of a new cycle, and so on.
Although allowed by Quebec legislation, consent delegated to an authorized third party does not optimally promote transparency, as citizens are not necessarily informed about access to their health data or the purposes for which they are used – in fact, citizens are almost never informed on an individual basis. Existing consent models are not adapted to LHSs, which require easier and faster access to data, in compliance with Quebec law.
By focusing on ethical, legal, and social issues, the CLARET research program, conducted in conjunction with technological work on data access, aims to promote public acceptability of the use of the health data in research within the context of learning healthcare systems.
Through its research activities, the CLARET program explores alternative approaches to current consent models for the secondary use of health data – that is, their use in a context other than that of healthcare provision. It is also interested in the needs and expectations of the Quebec population regarding freely consented and informed use of health data for health research purposes.
The CLARET team places citizens at the heart of the decisions surrounding the use of their health data in research: each phase of the research program includes research activities in the form of surveys and focus groups where individuals representing different groups in Quebec society are consulted.
The results of these research activities and consultations with people with expertise in various fields (ethics, legal, security, IT) have resulted in recommendations to decision-makers to guide them in implementing digital solutions where citizens can give their free and informed consent to the use of their health data, and receive the desired information when research projects use their health data.
Exploration of innovative consent approaches to support transparency and autonomy around access to health data and their use in research within the context of LHS. Then, after consulting citizens, formulation of recommendations guiding decisions in Quebec regarding the evolution of current ethical and legal frameworks around access to health data and their use in research.
Formulation of recommendations based on the needs and expectations of the Quebec population regarding a digital transparency portal that will promote the transmission of information concerning the use of health data in research.
Formulation of recommendations based on the needs and expectations of the Quebec population regarding a digital metaconsent portal that will facilitate the consent process for access to health data and their use in research.
Groupe de recherche interdisciplinaire en informatique de la santé
Université de Sherbrooke
2500, boul. de l'Université, Sherbrooke (Québec) J1K 2R1 Canada
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