Alyssa Foote
Alyssa Foote is a health data and informatics professional with expertise in leveraging data for improved health outcomes. With a Master of Data Science from UBC and a Bachelor of Science in Health Information Science and Computer Science from UVic, she has experience working with Canadian and English health data. As a Health Data Research Associate at the World Data System, she contributes to improving health data accessibility and interoperability. Alyssa is passionate about facilitating the sustainability and equitability of healthcare research.
Sessions
The Research Data Alliance (RDA) is a global network of experts that fosters collaboration on key data-related challenges, such as interoperability. The Global Open Research Commons (GORC) model is one example that provides a high-level framework for interoperability across diverse research commons. This presentation will introduce the Health Data Commons GORC Profile Working Group, which aims to adapt the GORC model for health data commons (HDCs). By developing a standardized metadata schema, this work will enhance the findability, accessibility, interoperability, and reusability (FAIR principles) of health data, ultimately supporting researchers, clinicians, and improving patient care. This work has the potential to significantly impact the health research ecosystem, including the vital role health librarians play in supporting data-driven research. This presentation will provide an overview of the working group's objectives and progress, and discuss the potential implications of this work for the future of health data sharing and discovery.
Introduction: The Canadian digital health landscape is a complex ecosystem with extensive data crucial for research and innovation. This analysis provides an overview of key national and provincial organizations in health data stewardship, mapping their roles, interconnections, and essential data repository attributes to highlight current health data management practices in Canada.
Method: Identified through prior knowledge, re3data.org, and Google searches, a selection of Canadian health data entities was examined for description, users, partners, data accessibility, and re3data presence. Data repositories were further analyzed against key attributes drawn from the Research Data Alliance's "Common Descriptive Attributes of Research Data Repositories" report.
Discussion: This analysis demonstrates that the diverse Canadian health data ecosystem exhibits varying maturity levels in data management and access. Significant variations were observed in accessibility, data catalogues, metadata standards, use of a persistent identifier (PID) system, and re3data entries, indicating inconsistencies in discoverability and transparency.
Recommendations: To maximize the impact and FAIR (Findable, Accessible, Interoperable, Reusable) use of Canadian health data, this report recommends enhancing data management practices, including improved metadata standards, increased PID system adoption, and widespread data repository certification. The World Data System can support this through knowledge sharing and advocating for international standards.
Conclusion: The Canadian digital health data landscape shows strengths in research and collaboration, but needs to improve in other areas such as standardization and metadata. Addressing these issues with World Data System support is crucial for a more robust and interoperable infrastructure for effective health research, benefiting all Canadians.
This panel will explore the critical role of open science principles in transforming healthcare research in Canada. A diverse panel will share their expertise: a research data librarian will discuss the data discoverability process in Canada and the role of persistent identifier infrastructure in supporting linked data; a data scientist will provide insights into the technical and ethical considerations of implementing federated data systems and leveraging open data for research; and a health research professional will present strategies for enhancing data accessibility and interoperability within the Canadian healthcare research landscape. Following these brief presentations, a moderated discussion led by a World Data System representative will delve deeper into: a) the significance of federated health data systems, which enable collaborative research while preserving data privacy and security; b) the crucial role of persistent identifiers in ensuring data discoverability and interoperability; and c) how open science practices, including data sharing, transparency, and reproducibility, can accelerate medical breakthroughs, improve patient outcomes, and foster a more equitable and innovative healthcare system.