Empowering Researchers with Effective Language for Patient Consent to Foster Health Data Sharing.
May 27, 2025, 12-1PM EST.
Open science aims to ensure transparency, reproducibility, and the ability to enhance collaboration and to innovate and accelerate scientific progress in research. Most health research does not get shared beyond the research team or their collaborators, even in instances where policies are created to encourage sharing. Provided that privacy safeguards are in place, we know from previous research most participants are willing to share their data for a wide range of uses. Our team from the Metaresearch and Open Science Program at the University of Ottawa Heart Institute (UOHI) recognized a gap in participant consent forms, with many templates in our landscape not yet having optimal language to accommodate open data and data deposits. To further biomedical research workflows following research data management (RDM) best practices in the data management plan (DMP) creation and implementation and data sharing, we developed harmonized language in four consent templates including for prospective and retrospective controlled and open access data sharing.
May 27, 2025, 12-1PM EST.
Open science aims to ensure transparency, reproducibility, and the ability to enhance collaboration and to innovate and accelerate scientific progress in research. Most health research does not get shared beyond the research team or their collaborators, even in instances where policies are created to encourage sharing. Provided that privacy safeguards are in place, we know from previous research most participants are willing to share their data for a wide range of uses. Our team from the Metaresearch and Open Science Program at the University of Ottawa Heart Institute (UOHI) recognized a gap in participant consent forms, with many templates in our landscape not yet having optimal language to accommodate open data and data deposits. To further biomedical research workflows following research data management (RDM) best practices in the data management plan (DMP) creation and implementation and data sharing, we developed harmonized language in four consent templates including for prospective and retrospective controlled and open access data sharing.
Our standardized pan-Canadian approach to consent for data sharing will help to streamline greater coordination for downstream data deposit or sharing while participants have the opportunity to give their free and informed consent in support of open science practices.
Presented by: Dr. Kelly Cobey and Jessica Edmonds
Dr. Kelly Cobey
is a Scientist and the Director of the Metaresearch and Open Science Program at the University of Ottawa Heart Institute. She is also the Open Science Cross- Cutter Lead at the Brain-Heart Interconnectome, and an Associate Professor in the School of Epidemiology and Public Health at uOttawa. As a trained Social Psychologist she brings mixed-methods expertise in quantitative and qualitative research practices, including survey design and focus group research. She is the co-chair of DORA (Declaration on Research Assessment) and her research interests focus on reproducibility, data management and sharing, and research reporting transparency.
Jessica Edmonds
is a Data Governance and Education Specialist in the Meta-Research and Open Science Program at the University of Ottawa Heart Institute (UOHI). Jessica is working collaboratively with the Brain-Heart Interconnectome (BHI) Data Portal Team to develop ARCHIMEDES (Advanced Research Collaboration for Health Integration, Medical Exploration, and Data Synthesis) a user-friendly system with centralized access to curated and federated brain-heart health data and provide an open-access repository and leading- edge analytic tools and resources. She is developing governance framework and educational documents for ARCHIMEDES. Jessica also leads the development of data sharing consent templates for Research Ethics Boards. She has worked with patients and caregivers and privacy professionals to address different types of data sharing and promote open science best practices.
Date de l'événement: 27 mai 2025 | Ville: | Site / Liue: Online