12 research outputs found

    Gift, reciprocity and learning health systems

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    Abstract : Lee (In press) suggests a conceptualization of health data sharing not merely as an act of altruism, but as a gift. The difference is important, as the inscription of the latter in a social context involves a network of mutual obligations. She calls for an anthropological analysis of the notion of gift that could shed light on the moral relationships involved in data sharing in precision medicine. She also calls for a shift from the emphasis on individual values – such as autonomy – to more communal values such as reciprocity, involving a specific attention to minorities

    Role of researchers in the ethical conduct of research: a discourse analysis from different stakeholder perspectives

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    Abstract: The ethical conduct of research rests largely on researchers, and as such, an understanding of how they perceive and enact their role in research is paramount. However, the literature around ethics and research mostly focuses on researchers’ perception of Research Ethics Boards (REB; also known as Institutional Review Boards) roles and functions. To fill that gap, we analyzed the perceptions of researchers, REB members, and influential parties (n = 40) about researchers’ role in the ethical conduct of research through discourse analysis. Three discourses emerged: researchers as reflective practitioners, protectors of participants, and technicians. Understanding the common- alities and differences among the discourses may foster a shared and compelling institutional research culture

    Le Cirius et les dĂ©fis des systĂšmes de santĂ© apprenants de demain : exemple d’application aux maladies rares Ă  travers le rĂ©seau franco-quĂ©bĂ©cois Ensemble

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    Notre colloque s’est intĂ©ressĂ© Ă  une approche novatrice qui contribuera Ă  amĂ©liorer les soins et la recherche en santĂ©, soit le systĂšme de santĂ© apprenant (SSA). Un SSA mise sur la rĂ©utilisation des donnĂ©es « de vie rĂ©elle » afin d’amĂ©liorer les soins et services offerts aux patients. Celles-ci comprennent toutes les donnĂ©es produites en continu par les professionnels de la santĂ© dans le cadre du soin ou recueillies par les patients, mais aussi les donnĂ©es de conditions environnementales, les donnĂ©es d’applications ou d’appareils du quotidien tels qu’une montre connectĂ©e, un thermostat intelligent, etc. Il y a lĂ  une source incroyable d’informations qui, intĂ©grĂ©e aux SSA, aurait le potentiel de mener Ă  tant de connaissances, de dĂ©couvertes et d’avancĂ©es liĂ©es Ă  la santĂ©. Mais pour y arriver, il faut s’attaquer aux enjeux techniques, Ă©thiques, lĂ©gaux, sociĂ©taux et ainsi de suite. Notre colloque a donc servi Ă  la fois Ă  dresser l’état des lieux et Ă  Ă©tablir la feuille de route, qui comprend plusieurs initiatives dĂ©jĂ  en branle dans la bonne direction. L’évĂšnement a Ă©galement Ă©tĂ© l’occasion de faire connaitre les deux nouveaux moteurs de cette ambitieuse mission d’amĂ©lioration des soins : le Cirius et le rĂ©seau Ensemble. Le premier jour du colloque a surtout posĂ© les bases thĂ©oriques. Il a ainsi Ă©tĂ© question de partage des donnĂ©es au moyen de la plateforme PARS3 et des ontologies que cela requiert, puis des enjeux Ă©thiques et de cybersĂ©curitĂ© qu’impliquent les Ă©changes de donnĂ©es, et enfin, de l’incontournable interdisciplinaritĂ© qui en dĂ©coule. Le deuxiĂšme jour s’est quant Ă  lui intĂ©ressĂ© Ă  l’exploitation de donnĂ©es de santĂ© d’une perspective mise en pratique. Les diffĂ©rentes prĂ©sentations se sont donc attardĂ©es Ă  l’apprentissage machine et Ă  d’autres analyses de donnĂ©es, puis Ă  la prestation des soins soutenue par l’aide Ă  la dĂ©cision et par le transfert des connaissances. La journĂ©e s’est conclue sur une rĂ©flexion Ă  propos du passage de la thĂ©orie Ă  la pratique. Enfin, le troisiĂšme jour s’est concentrĂ© sur un exemple concret de la mĂ©decine de demain : le rĂ©seau Ensemble, qui exploitera tout le potentiel des SSA pour faciliter la recherche et l’amĂ©lioration des soins en lien avec les maladies rares. Or, y arriver nĂ©cessitera la concertation de nombreux acteurs, d’oĂč l’attention particuliĂšre portĂ©e Ă  la mise en place et Ă  la consolidation de plusieurs collaborations. Par ailleurs, l’incontournable session de prĂ©sentation par affiches s’est exceptionnellement tenue de façon virtuelle — pandĂ©mie oblige —, sous forme de capsules vidĂ©o Ă  visionner Ă  tout moment durant le colloque. Les 14 vidĂ©os prĂ©sentaient de façon vulgarisĂ©e des projets touchant aux infrastructures informatiques, Ă  l’éthique et au consentement, Ă  la cybersĂ©curitĂ©, Ă  l’apprentissage machine, Ă  l’analyse statistique, aux ontologies et Ă  l’amĂ©lioration de la qualitĂ© des soins. Au-delĂ  des notions scientifiques exposĂ©es, le colloque a Ă©galement crĂ©Ă© un espace d’échange entre les intervenants impliquĂ©s en santĂ©, afin de multiplier et solidifier les collaborations. Bref, ce fut l’occasion de crĂ©er des ponts et de repenser la santĂ© avec une multitude de perspectives, afin de construire ensemble la santĂ© de demain

    Citizens, research ethics committee members and researchers' attitude toward information and consent for the secondary use of health data: Implications for research within learning health systems

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    International audienceA provincial survey was conducted to assess citizens, research ethics committee (REC) members and researchers' attitude toward information and consent for the secondary use of health data for research within a learning health system (LHS). The results show that: 1) reuse of health data for research to advance knowledge and improve care is values by all parties; 2) consent regarding health data use for research is fundamental particularly to citizens, even when the data are deidentified; 3) a secure website to support the information and consent processes was appreciated by all. Researchers were more comfortable with the use of de-identified health data for research without informing nor seeking consent from people than citizen and REC member respondents. This survey was part of a larger project that aims at exploring public perspectives on alternate approaches to the current consent models in Quebec to take into consideration the unique features of LHS. The revised consent model will need to ensure that citizens are given the opportunity to be better informed about incoming researches with their health data and have their say, when possible, in the use of their data

    Meta-consent for the secondary use of health data within a learning health system: a qualitative study of the public’s perspective

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    International audienceBackground: The advent of learning healthcare systems (LHSs) raises an important implementation challenge concerning how to request and manage consent to support secondary use of data in learning cycles, particularly research activities. Current consent models in Quebec were not established with the context of LHSs in mind and do not support the agility and transparency required to obtain consent from all involved, especially the citizens. Therefore, a new approach to consent is needed. Previous work identified the meta-consent model as a promising alternative to fulfill the requirements of LHSs, particularly large-scale deployments. We elicited the public's attitude toward the meta-consent model to evaluate if the model could be understood by the citizens and would be deemed acceptable to prepare for its possible implementation in Quebec.Methods: Eight focus groups, with a total of 63 members of the general public from various backgrounds were conducted in Quebec, Canada, in 2019. Explicit attention was given to literacy levels, language spoken at home and rural vs urban settings. We assessed attitudes, concerns and facilitators regarding key components of the meta-consent model: predefined categories to personalized consent requests, a dynamic web-based infrastructure to record metaconsent, and default settings. To analyse the discussions, a thematic content analysis was performed using a qualitative software. Results: Our findings showed that participants were supportive of this new approach of consent as it promotes transparency and offers autonomy for the management of their health data. Key facilitators were identified to be considered in the implementation of a meta-consent model in the Quebec LHSs: information and transparency, awareness campaigns, development of educational tools, collaboration of front-line healthcare professionals, default settings deemed acceptable by the society as well as close partnerships with recognized and trusted institutions.Conclusions: This qualitative study reveals the openness of a sample of the Quebec population regarding the metaconsent model for secondary use of health data for research. This first exploratory study conducted with the public is an important step in guiding decision-makers in the next phases of implementing the various strategies to support access and use of health data in Quebec

    Patients’ and Members of the Public’s Wishes Regarding Transparency in the Context of Secondary Use of Health Data: Scoping Review

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    BackgroundSecondary use of health data has reached unequaled potential to improve health systems governance, knowledge, and clinical care. Transparency regarding this secondary use is frequently cited as necessary to address deficits in trust and conditional support and to increase patient awareness. ObjectiveWe aimed to review the current published literature to identify different stakeholders’ perspectives and recommendations on what information patients and members of the public want to learn about the secondary use of health data for research purposes and how and in which situations. MethodsUsing PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) guidelines, we conducted a scoping review using Medline, CINAHL, PsycINFO, Scopus, Cochrane Library, and PubMed databases to locate a broad range of studies published in English or French until November 2022. We included articles reporting a stakeholder’s perspective or recommendations of what information patients and members of the public want to learn about the secondary use of health data for research purposes and how or in which situations. Data were collected and analyzed with an iterative thematic approach using NVivo. ResultsOverall, 178 articles were included in this scoping review. The type of information can be divided into generic and specific content. Generic content includes information on governance and regulatory frameworks, technical aspects, and scientific aims. Specific content includes updates on the use of one’s data, return of results from individual tests, information on global results, information on data sharing, and how to access one’s data. Recommendations on how to communicate the information focused on frequency, use of various supports, formats, and wording. Methods for communication generally favored broad approaches such as nationwide publicity campaigns, mainstream and social media for generic content, and mixed approaches for specific content including websites, patient portals, and face-to-face encounters. Content should be tailored to the individual as much as possible with regard to length, avoidance of technical terms, cultural competence, and level of detail. Finally, the review outlined 4 major situations where communication was deemed necessary: before a new use of data, when new test results became available, when global research results were released, and in the advent of a breach in confidentiality. ConclusionsThis review highlights how different types of information and approaches to communication efforts may serve as the basis for achieving greater transparency. Governing bodies could use the results: to elaborate or evaluate strategies to educate on the potential benefits; to provide some knowledge and control over data use as a form of reciprocity; and as a condition to engage citizens and build and maintain trust. Future work is needed to assess which strategies achieve the greatest outreach while striking a balance between meeting information needs and use of resources

    Utilisations secondaires des données de santé : impacts de la transparence

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    La notion de transparence ressort rĂ©guliĂšrement des discussions autour des utilisations secondaires des donnĂ©es de santĂ©. Peu d’études se penchent toutefois sur les impacts de la prĂ©sence ou de l’absence de transparence ou de son absence sur les membres du public. Cette revue de littĂ©rature rĂ©pond Ă  cette lacune. Elle rĂ©sulte d’une analyse secondaire de 124 textes issus d’une recension de la portĂ©e sur la transparence conformĂ©ment aux lignes directrices PRISMAS-ScR. Les rĂ©sultats contribuent Ă  identifier les impacts nĂ©gatifs ou positifs et Ă  les associer Ă  certaines composantes communicationnelles relatives aux utilisations secondaires de donnĂ©es de santĂ©. Ils permettent Ă©galement d’identifier les composantes associĂ©es Ă  une communication jugĂ©e transparente ou opaque par les parties prenantes. La transparence, et plus particuliĂšrement la continuitĂ© de la communication, est fortement associĂ©e Ă  une augmentation de la confiance et de l’acceptabilitĂ© sociale alors qu’en gĂ©nĂ©ral, les membres du public perçoivent nĂ©gativement un manque de transparence. Cette revue de littĂ©rature approfondit Ă©galement les connaissances sur les risques d’impacts nĂ©gatifs de la communication transparente.The notion of transparency regularly comes up in discussions about the secondary uses of health data. Few studies, however, examine the impact of the presence or absence of transparency on members of the public. This literature review responds to this gap in the scientific literature. It is the result of a secondary analysis of 124 texts from an exploratory review on transparency, following the PRISMAS-ScR guidelines. The results help to identify negative or positive impacts and associate these with certain communication components relating to secondary uses of health data. They also make it possible to identify the components associated with communication deemed transparent or opaque by stakeholders. Transparency, and more specifically continuity of communication, is strongly associated with increased trust and social acceptability, whereas members of the public generally perceive a lack of transparency negatively. This literature review also deepens our understanding of the potential negative impacts of transparent communication
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