Archives du mot-clé données de santé

Accessing Data through DASH

Are you a researcher seeking administrative health data from more than one province or territory in Canada? HDRN Canada’s Data Access Support Hub (DASH) offers coordinated services to researchers interested in accessing multi-regional datasets. Learn how DASH can help you navigate the data access process as well as the centralized services and tools available for researchers conducting research projects in more than one region, including:

  • the single data access request form for researchers to request data from multiple regions
  • support from experts at data centres across Canada
  • an inventory of all the datasets available via HDRN Canada and
  • an algorithm inventory to aid in analysis of the data.

ABOUT THE SPEAKERS:

Carrie-Anne Whyte is a Program Lead with HDRN Canada’s Data Access Support Hub (DASH). She is located at the Canadian Institute for Health Information (CIHI) in Ottawa, where she has worked for the last decade. Her areas of focus include analysis, methodology and health data. Prior to her career at CIHI and HDRN, Carrie-Anne held roles with the Public Health Agency of Canada and the Ottawa Hospital Research Institute. Carrie-Anne holds a Master of Public Health from McGill University.

Stefana Jovanovska is a Senior Research Project Manager on the Data and Analytic Services team at ICES. With a diverse professional background encompassing analytical chemistry, quality control and clinical research, she brings a wealth of expertise to her role. Stefana’s primary focus is supporting publicly funded research as well as multi-regional projects support in collaboration with HDRN Canada’s Data Access Support Hub (DASH) team.

PLEASE NOTE: This event will be recorded and posted on hdrn.ca. This webinar is presented in English.



Public Trust, Literacy & Health Data Foundations in Canada

It is critical for the public to have trust in governments and organizations that collect, protect, share and use health data. In this webinar, Julia Burt and Dr. Kim McGrail will provide an overview of a foundational paper developed by HDRN Canada, in collaboration with the Public Health Agency of Canada, on public trust and data literacy. This paper starts with principles outlined in the Pan-Canadian Health Data Charter, which puts people and populations at the centre of health data management. It then highlights the risks and benefits of data sharing and identifies other principles, all of which relate to public trust.

During the session, Julia and Dr. McGrail will highlight the engagement processes and methods used to develop the paper, and present its key findings, including the paper’s six recommendations for trustworthy data practices. These recommendations are intended to help different levels of government, health system organizations and others work together to earn trust in how health data are managed and used. They acknowledge that trust is earned based on what is done, how it is done, and how transparent and understandable government or organizational practices are.

About the Speakers

Julia Burt is HDRN Canada’s Public Engagement Operational Lead, working closely with the network’s Public Advisory Council to accelerate meaningful public engagement. She works with diverse members of the public on projects related to health data, including the co-creation of plain language about data, as well as exploring the public’s perception of acceptable uses and users of health data. Prior to her involvement with HDRN Canada, she was the Patient Engagement and Training and Capacity Lead with the Newfoundland and Labrador SPOR SUPPORT Unit.

Dr. Kim McGrail is a Professor in the School of Population and Public Health and Centre for Health Services Policy Research at the University of British Columbia. She is the Scientific Director of Population Data BC. Dr. McGrail’s research interests are quantitative policy evaluation and all aspects of population data science. She the 2009 -2010 Commonwealth Fund Harkness Associate in Health Care Policy and Practice, the 2016 recipient of the Cortlandt JG Mackenzie Prize for Excellence in Teaching, and the 2017 recipient of UBC’s Excellence in Clinical or Applied Research Award. She was part of the Expert Advisory Group for the pan-Canadian Health Data Strategy and is currently a member of the Global Partnership for AI as part of the Data Governance Working Group.



Breaking Barriers: Distributed Analysis for Multi-regional Research

This rexclusive webinar introducing a groundbreaking methodological innovation designed to transform how researchers conduct multi-regional studies, on THURSDAY, JUNE 12 at 10:00 a.m. PT / 1:00 p.m. ET. Traditional data-sharing models often face roadblocks related to privacy and regulatory compliance. Distributed analysis offers a powerful alternative: enabling researchers to analyze data across multiple regions without physically pooling datasets.

In this session, you’ll learn:

  • How distributed analysis works and what makes it different from centralized approaches
  • Real-world examples where the method has unlocked new collaborative opportunities
  • Key benefits for privacy, scalability and regulatory compliance
  • Practical guidance on how to get started with the Data Access Support Hub (DASH) at HDRN Canada

Whether you’re conducting multi-regional public health research, managing clinical trials, or collaborating across institutions, this webinar will give you helpful tools to support you with your research.

Who should attend: Researchers, data scientists, epidemiologists, research administrators, and anyone involved in multi-regional research.



Sacred Knowledge: Protecting Indigenous Data Sovereignty

In an era where data is the new gold, the importance of protecting Indigenous data sovereignty has never been more critical. Join Marlyn Bennett, an Anishinaabe interdisciplinary researcher and Co-Lead of CHILD-BRIGHT’s Equity, Diversity, Inclusion, Indigenization and Decolonization (EDI-DI) Program on November 14 at 1 p.m. ET/10 a.m. PT as she delves into the profound significance of safeguarding Indigenous knowledge and data in health research.

This talk will explore the historical and cultural contexts that underscore the need for Indigenous control over data, the challenges faced in the fight for sovereignty, and the ways in which Indigenous communities are reclaiming their narratives through data governance.

Marlyn Bennett will share insights into the ethical considerations, best practices, and collaborative efforts essential for protecting sacred Indigenous knowledge. Attendees will gain a deeper understanding of the pivotal role that data sovereignty plays in empowering Indigenous communities, preserving cultural heritage, and ensuring that data is used in ways that respect Indigenous values and traditions.

This talk is a call to action for researchers, policymakers, and community members to support and advocate for Indigenous data sovereignty, recognizing it as a vital component of Indigenous rights and self-determination.



Community Attitudes on Using Health Data in Research in Canada & Australia

Date and time: Tuesday, June 18 · 12 – 2pm EDT

Is this okay? Community attitudes on using health data in research in Canada and Australia: A cross-cultural exchange

The access and use of health data for research raises concerns related to privacy, commercial motives, equity and fairness for members of the public who want to know who is using data generated from their personal information and why. But despite concerns, there are clear benefits to using health data in research, including better patient care, better health system planning, and better understanding of disease and wellness.

In this two-hour, interactive workshop co-hosted by HDRN Canada and PHRN Australia, Julia Burt and Dr. Annette Braunack-Mayer will discuss how public engagement and dialogue can help us understand community attitudes about the use of health data in research. They will explore why members of the public support the use of health data in research and under what conditions, as well as reservations or concerns that arise. Julia and Annette will compare engagement methods from their respective research projects on community attitudes related to the use of health data in research, and share findings from Canada and Australia.

During the workshop, participants will be invited to share their thoughts on the use of health data for research through an interactive whiteboard and facilitated discussion. Participants will also be invited to view and contribute to comments from an identical workshop hosted in Australia on June 3.

Ideas generated will inform a joint paper by HDRN Canada and PHRN Australia.

ABOUT THE SPEAKERS

Julia Burt is HDRN Canada’s Public Engagement Operational Lead, working closely with the network’s Public Advisory Council to accelerate meaningful public engagement. She works with diverse members of the public on projects related to health data, including the co-creation of plain language about data, as well as exploring the public’s perception of acceptable uses and users of health data. Prior to her involvement with HDRN Canada, she was the Patient Engagement and Training and Capacity Lead with the Newfoundland and Labrador SPOR SUPPORT Unit (NL SUPPORT).

Dr. Annette Braunack-Mayer is the Head of the School of Health and Society at the University of Wollongong in Australia. She is a bioethicist, with research grounded in values-based social science. Her research combines theoretical analyses of health systems, policies and practices with the views and experiences of stakeholder groups, including community members, patients, clinicians and policy makers to develop real world solutions for policy makers. Dr. Braunack-Mayer has expertise in the use of deliberative methods to address contentious ethical and policy issues in health and social care. In recent years, her research has focused on social and ethical issues in big data and artificial intelligence, and on the delivery of culturally safe health and social services for older Aboriginal peoples. She also chairs two Human Research Ethics Committees and the Lumos Data Governance Committee, which supports a large program of work for the New South Wales government collecting and using general practice data.



Health Data for All of Us: Earning Trust Through Transparency

Health Data for All of Us: Earning Trust Through Transparency is HDRN Canada’s second annual hybrid public forum for researchers, community groups, members of the public and policymakers to engage with topics related to health data access and use in Canada. Learn about HDRN Canada’s areas of work and participate in discussions about the issues of trust and transparency in the use of health data in Canada.

This event will take place on Tuesday, April 23 via Zoom and in-person at Le Westin Montreal.

Our keynote speaker is Dr. Antoine Boivin, a family physician in the community of Center-South Montreal. Dr. Boivin is the co-founder and scientific director of the Centre of Excellence on Partnership with Patients and the Public. He is also co-director of the Quebec SPOR-SUPPORT Unit.

PLEASE NOTE: If you would like to request a fee waiver, or if you are affiliated with HDRN Canada, please connect with us at regarding registration for this event.



Why Patient Engagement Matters in Data Science, Engineering & Technology

This is a beginner level session, intended as an introduction to patient engagement and its importance in the specific context of data science, engineering and technology. Attendees will be able to learn about the underlying principles of patient engagement, its relevance in these fields, and examples of ways in which the voices and perspectives of people with lived and living experience of health conditions, their families, and communities can support health research. There will also be ample opportunity for questions and discussion. This session will also serve as a starting point for any attendees interested in learning more about their eligibility and how to apply for the Dr. Wattamon Srisakuldee Memorial PREPPP Award.

Learning Objectives

Following this session, attendees should be able to:

  • Describe the concept of patient engagement as it relates to health research;
  • Discuss ways in which lived experience can inform data science, technology and engineering research projects; and
  • Develop draft strategies or plans for engaging people with lived experience in projects in these research fields.


Federated Analysis: Current Approaches for Distributed Analysis

Rejoignez-nous le 8 février à 10h HP / 13h HE pour le deuxième webinaire de la série l’Analyse fédérée : Série d’apprentissage collectif sur l’état de la science.

Dans Approches actuelles de l’analyse distribuée, Michael Paterson, chercheur principal pour CNODES Ontario, et Dr Robert Platt, co-directeur exécutif de CNODES, explorent les approches actuelles de l’analyse fédérée ainsi que leurs avantages et limites respectifs à travers des cas d’utilisation pratiques et des discussions. Inscrivez-vous.

À propos des conférencier-e-s

Michael Paterson est professeur adjoint au département de médecine familiale de l’Université McMaster et à l’Institut des politiques, de la gestion et de l’évaluation de la santé de l’Université de Toronto. Il est titulaire d’une licence en biologie humaine de l’Université de Guelph et d’une maîtrise en physiologie de l’Université de Toronto. Michael est chercheur principal pour le site ontarien du CNODES depuis sa création, et il est actuellement membre du comité directeur du CNODES, de l’équipe de la base de données, de l’équipe de formation et de l’équipe d’application des connaissances.

Le Dr Robert Platt est professeur au département d’épidémiologie, de biostatistique et de santé au travail de l’Université McGill. Il est titulaire de la chaire Albert Boehringer I en pharmaco-épidémiologie. Le Dr Platt est le co-responsable exécutif du CNODES et dirige l’équipe Méthodes du CNODES depuis sa création. Ses principaux domaines de recherche sont les méthodes statistiques et leurs applications aux données administratives, la pharmaco-épidémiologie, l’épidémiologie périnatale et les méthodes d’inférence causale à partir d’études épidémiologiques.



Practice Based Research and Learning: 2024 CPCRN Learning Series

Leçons tirées sur l’engagement dans le cadre du projet PaRIS de l’OCDE

Date et l’heure

30 Jan 2024, 12-1 PM EDT/HE, Zoom

Panélistes

  • Vivian Ramsden (inf. aut. , Ph. D. , MCMF (Hon.), FCAHS), Professeure et directrice, division de la recherche, Université de la Saskatchewan, Département de médecine familiale universitaire
  • Marie-Eve Poitras (inf. aut. , Ph. D.), Professeure, Chaire CRMUS sur les pratiques professionnelles optimales en soins primaires, Université de Sherbrooke, Département de médecine familiale
  • Shelley Doucet (inf. aut. , Ph. D.), Professeure, Directrice du Centre de recherche sur les soins intégrés, Chaire Jarislowsky en soins interprofessionnels axés sur le patient, Université du Nouveau-Brunswick
  • Udoka Okpalauwaekwe (MBBS, MSP, candidat au doctorat), Chargé de projet, RCRSP – SK
  • Brenda Andreas, Patiente partenaire, Collaboratrice de recherche

Cette session de la série d’apprentissage explorera des stratégies innovantes pour recruter et engager des pratiques de soins primaires et des patientes et des patients, pour partager des idées et pour travailler en vue d’une approche plus centrée sur le patient et plus cohérente au niveau national pour la collecte de données déclarées par les patientes et les patients. Nous discuterons également du potentiel d’une approche pancanadienne pour les données déclarées par les patientes et les patients, en mettant l’accent sur les processus participatifs et en nous inspirant de l’étude PaRIS de l’OCDE.

Objectifs d’apprentissage

  1. S’informer sur la manière dont les mesures déclarées par les patientes et les patients peuvent contribuer à une meilleure compréhension générale des soins primaires.
  2. Partager des stratégies qui peuvent être mises de l’avant dans les réseaux de soins primaires et les cliniques pour soutenir la collecte de données déclarées par les patientes et les patients.
  3. Discuter de la façon dont nous pouvons évoluer vers une approche pancanadienne des données déclarées par les patientes et les patients en utilisant des processus participatifs basés sur les enseignements de l’étude PaRIS de l’OCDE.

Inscrivez-vous à l’avance à ce webinaire ici !



Sociodemographic Data in Canada

Rejoignez-nous pour notre prochaine série de conférences Les grandes idées sur les données de santé le jeudi 25 janvier à 10:00 HP / 13:00 HE.

Le Dr Kwame McKenzie et Jemal Demeke du Wellesley Institute explorent l’utilisation et la gouvernance des données sociodémographiques au Canada. Les données sociodémographiques sont de plus en plus reconnues comme un outil important pour suivre les disparités et faire progresser l’équité pour les populations marginalisées. Les intervenants expliquent comment le Wellesley Institute a renforcé le dialogue dans le secteur de la santé sur la façon de collecter, d’utiliser et de gouverner ces données de manière éthique et responsable. Inscrivez-vous. 

À propos des conférenciers

Le Dr Kwame McKenzie est directeur général du Wellesley Institute, professeur titulaire au département de psychiatrie de l’université de Toronto et expert international sur les causes sociales de la maladie et le développement de politiques sociales et de systèmes de santé efficaces et équitables. Il est également directeur de l’équité en matière de santé au Centre for Addiction and Mental Health et psychiatre praticien. En tant que conseiller politique, clinicien, éducateur et universitaire, auteur de plus de 240 articles évalués par des pairs et de six livres, le Dr McKenzie travaille depuis trente ans à l’amélioration de la santé de la population et des services de santé. Son travail avec ses collègues du Wellesley Institute a influencé la politique sociale locale et nationale, et ses recherches et collaborations universitaires ont modifié l’enseignement, la pratique clinique et la politique en matière de psychiatrie.

Jemal Demeke est chercheur au Wellesley Institute. Ses recherches portent sur des sujets tels que l’épidémiologie des maladies infectieuses, la science de la mise en œuvre, le changement organisationnel et les interventions sanitaires équitables. Il a travaillé pour des centres de défense des droits de la personne, des organisations communautaires, des universités de l’Ivy League et des réseaux hospitaliers. Les communautés noires et les autres communautés racialisées sont toujours présentes dans ses activités professionnelles. Il a fondé des initiatives d’équité dans de grandes organisations, dirigé des ateliers destinés aux éducateurs, aux prestataires de soins de santé et aux décideurs politiques, et établi des relations entre les acteurs communautaires et les agences de santé. Son travail au Wellesley Institute s’appuie sur ces expériences pour éclairer les changements de politique en matière de gestion et de gouvernance des données à travers le Canada.