GRIIS

Phase 2

Phase 2 – Transparency Portal Proposals

Until now, the research carried out during this phase showed that, in a health data access and their research usage context:

  • a communication with an adequate level of transparency contributes positively to social licence and to the free and informed consent process, whereas an insufficient or excessive level of transparency have negative impacts.
  • people have high expectations, both in terms of what information they want and the way, time and conditions in which they want to receive.

A transparency portal is a digital portal that allows individuals to know several types of information about the use of their data. This could include general information about research with health data. It also could allow individuals to find out which research projects have used their health data and the reasons why. This portal could also provide information about practical benefits of these research projects.

Context

Phase 1 research highlighted how important the information was in people’s decision to consent or not to the use of their health data in research. The survey (Cumyn et al., 2024) showed that transparency itself increases social licence (in addition to consent).

The research also revealed that the social licence regarding this use of health data depends not only on a better understanding but also on greater transparency of access to and use of this data.

The Québec population is presently poorly informed or misinformed about the use of their health data in research, since there are no centralized mechanisms where they can obtain information on the access and the secondary uses of their data.

As transparency is essential to obtaining informed consent, transparency mechanisms must be integrated into the LHS-compatible meta consent model. To achieve this, we first have to identify the information needs and expectations of different groups and communities in society regarding the use of their health data in research. (Cumyn et al., 2024)

Objectives

To formulate appropriate proposals for a transparency portal, the following objectives have been defined as part of the second phase of the research program:

OBJECTIVE 1

Identify:

  • generic information (on the use of data in general) and specific information (on the use of individual data) that people want to know in order to make informed choices about the use of their health data in research;
  • how information is to be transmitted, i.e. in what ways and under what conditions.

OBJECTIVE 2

Determine the level of citizen acceptability and understanding of the consent model deemed most appropriate in the context of use described above.

OBJECTIVE 3

Make recommendations promoting autonomy and transparency to the decision-makers responsible for improving ethical and legal frameworks in Québec for health data access and use in research.

Methodology


Through a literature review, identify different stakeholders’ perspectives and recommendations on what information patients and members of the public wish to know regarding the use of health data in research, how, and under what conditions

Secondly, conduct a secondary analysis of the articles selected for the literature review to characterize transparency in the context of communication regarding access to health data and their use in research. Also, identify factors that positively or negatively influence transparency and their impact.


The CLARET team carries out a sequential mixed methods study consisting of a survey, focus groups, and one-on-one interviews with citizens, including people from marginalized groups, to identify transparency needs in Québec for the use of health data in research.


NEXT

Based on the results obtained previously, make recommendations about a transparency portal for the population in the context of access to their health data and its use in research. These recommendations could be shared as part of a report, a brief, or discussions with some domain experts.

Present Conclusions

People’s Needs for Transparency

The literature review identified the needs of patients and members of the public in terms of transparency in the use of their health data in research:

Information sur la transparance
Source: Patients’ and Members of the Public’s Wishes Regarding Transparency in the Context of Secondary Use of Health Data: Scoping Review (2023)

Levels of Transparency and Their Impacts

The next figure summarizes, for each level of transparency, the social and individual impacts in terms of social licence of the secondary uses of health data.

Source: Utilisations secondaires des données de santé : impacts de la transparence (2024)

Scientific Benefits

Scientific Publications

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Cumyn A, Ethier J-F, Grantham É, Gros-Louis McHugh N Systèmes de santé apprenants et approches éthiques pour l’accès aux données [accepté]. Nouvelles pratiques sociales Cite

Conferences and Presentations

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Bilodeau E (2025) Uitilisations secondaires de données de santé : impacts de la transparence Cite
Cumyn A (2024) Les attentes sociétales en matière d'utilisation secondaire des données Cite
Cumyn A (2024) Place de la transparence dans l'utilisation secondaire des données et retour des résultats vers les participants à la recherche Cite
Ménard J-F (2024) Attentes sociétales et déploiement d'une nouvelle conception de l'utilisation des renseignements de santé en recherche : regard sur le processus québécois Cite
Ménard J-F (2023) 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 Cite
Cumyn A, Ethier J-F (2022) Enjeux autour de l'utilisation secondaire des données de santé et pistes de solution Cite
Cumyn A (2022) Cadre de gouvernance, principes directeurs et perspectives citoyennes Cite
Cumyn A (2022) Défis éthiques pour l'accès aux données au Québec Cite

Poster Presentations

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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

Book Sections

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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

Panel Discussions and Seminars

  • L’IA responsable et explicable en santé, quel cadre et quelle réglementation. Attache ta TUQ Sherbrooke (Tour des Universités Québécoises). May 29, 2024, Université de Sherbrooke. Sherbrooke, Canada. Guest panelist: Annabelle Cumyn
  • Le partenariat dans la recherche. Forum Coconstruire la santé. May 28, 2024. Sherbrooke, Canada. Guest panelist: Annabelle Cumyn.
  • Nos données, notre santé : informer et engager les patients et citoyens dans l’utilisation des données de santé en oncologie. May 13, 2024. ACFAS, Ottawa, Canada. Guest panelist: Annabelle Cumyn.
  • Les impacts des nouvelles lois et politiques de données sur la recherche en santé, CRCHUS, Sherbrooke, Canada. November 1, 2023. Guest panelist: 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. May 8, 2023.

Media

Images

Phase 2 research activities were diverse and rewarding, as shown by these photos.

2024 Science Picnic in Sherbrooke’s Jacques Cartier Park

Roxanne and Emmanuel ready to discuss transparency with citizens.
Pr Annabelle Cumyn discusses with a citizen about the information he would like to improve his trust in use of his health data in research.
Our research attracted the interest of many persons. The science picnic provided an opportunity for interesting exchanges.

Alphare, a precious collaborator

From the start of CLARET program in 2017, we have been working with Alphare, a community organization for popular literacy.
Thanks to Alphare, the team can ensure that their approach and the findings they wish to share are accessible to everyone.
In fact, Annie Poulin (executive director) and Céline Leclerc (literacy teacher) provided the research team with valuable advices on the tools developed for the focus groups that took place during phase 2.
In a pilot focus group organized by Alphare, we could even test these tools on volunteers.