Past RDM workshop sessions
If you were not able to watch the session, you can still watch them. All sessions are recorded and made available on the website. Click on the links below to watch past sessions.
Session 1 - Principles and policies in the data management and sharing landscape in Canada
Good Research Data Management (RDM) practices increase scientific integrity and quality and reuse of data. Recognizing this, RDM has become a renewed priority for the Canadian Tri-agencies (CIHR, SSHRC, and NSERC) with a new policy. In this webinar, Dominique and Lee discuss the principles and policies in the data management and sharing landscape in Canada.
Learning objectives:
- Learn about the benefits of research data management and sharing for researchers, science, and society.
- Familiarize yourself with the data management policies of Canadian research funders.
- Understand the objectives of a research data management plan.
- Learn about nationally available resources to help with data management and sharing.
About the speakers:
Session 2 - Using the Open Science Framework (OSF) for data sharing
Sharing research data can lead to numerous benefits for individual researchers and society, and it is essential to validate scientific discoveries. However, data sharing can be challenging for researchers to navigate. In this session, Ana Patricia Ayala discusses the benefits of data sharing and explains the main features of the Open Science Framework (OSF) to help you share your data.
Learning objectives:
- Learn what the Open Science Framework (OSF) is.
- Understand some of the key features OSF can do for you and your research.
- Explore OSF through a live demo.
- Understand the importance of documentation in data sharing, and transparency in research.
About the speaker:
Ana Patricia Ayala is the Research Services Librarian at Gerstein Science Information Centre, at the University of Toronto. Her research interests and passion focus in the areas of open science, transparency in research, reporting guidelines, and knowledge syntheses. She has degrees in Biology and Fine Arts from the University of North Carolina, and master’s in information and Library Studies from the University of Toronto.
Session 3 - Sharing biological data: why, when, and how
Genomics has a robust culture of data sharing, and this practice has contributed to accelerating science in the area. To make this data as impactful as possible, researchers who generate genomic data can take certain steps, such as: sharing the data with as few restrictions as possible, choosing the most appropriate data repositories for the type of data, and adding key metadata elements. In this talk, Dr. Samantha Wilson will discuss why, when, and how to share biological data, addressing the main issues in the process.
Learning objectives:
- Familiarize the audience with the data sharing principles.
- Outline the benefits of sharing biological data.
- Outline good practices in sharing metadata and code.
- Outline good practices in sharing genomics data, from file format to publicly available repositories.
About the speaker:
Dr. Wilson is an assistant professor in the department of obstetrics and gynecology at McMaster University. She completed her PhD in Medical Genetics at the University of British Columbia with Dr. Wendy Robinson, and a postdoctoral fellowship at Princess Margaret Cancer Centre with Dr. Michael Hoffman. She also leads the Wilson Pregnancy Lab.
Session 4 - Preclinicaltrials.eu and data sharing
Registering a protocol before starting an experiment (preregistration) is essential to increase transparency, help avoid duplication, and reduce the risk of reporting bias. In this session, Julia Menon will discuss the benefits of preregistration for animal studies, explain the process and introduce the registry dedicated to animal study protocols – www.preclinicaltrials.eu.
Learning objectives:
- Be able to describe three benefits of preregistration for animal studies.
- Understand the difference between ‘simple’ preregistration and registered reports.
- Be able to explain what Preclinicaltrials.eu is.
- Understand the advantages of using Preclinicaltrials.eu to preregister, in particular, related to transparency and data sharing.
About the speaker:
Julia Menon is the Daily Director of Preclinicaltrials.eu. She has a background in medical biology but has evolved in her career through meta-research, particularly preclinical systematic reviews and qualitative studies. She is a junior research fellow at The Netherlands Organisation for Health Research and Development, where she researches tools and methods to improve animal research’s transparency and robustness. Her current focus is on animal studies’ preregistration and how it may improve study quality and accessibility. She is also part of the SyRCLE’s network, is an administrator for the platform PROSPERO & is a section editor for Laboratory Animals.
Session 5 - Electronic Health Information sharing and privacy/security
Sharing electronic health information often comes with privacy and security concerns. In this session, Dr. Khaled El Eman will discuss best practices to manage risks in data sharing to protect the privacy of patients and the identity of providers.
Learning objectives:
- Understand the difference between primary and secondary uses of data, and the authorities for data disclosure.
- Be able to describe basic methods for managing data risk when sharing data.
- Learn about the main challenges with sharing data for research purposes.
About the speaker:
Dr. Khaled El Emam is a Professor at the University of Ottawa, Faculty of Medicine and School of Electrical Engineering and Computer Science, and a Senior Investigator at the Children’s Hospital of Eastern Ontario Research Institute. He is Director of the multi-disciplinary Electronic Health Information Laboratory, conducting research on privacy enhancing technologies to enable the sharing of health data for secondary purposes, including synthetic data generation, data anonymization and secure disease surveillance for public health purposes. He also held the Canada Research Chair in Electronic Health Information at the University of Ottawa from 2005 to 2015.
Session 6 - Indigenous data and open science intersection
Indigenous peoples’ data involves legal and ethical considerations and must be managed and shared with care. Research priorities may not reflect the needs of indigenous communities or may reinforce and perpetuate harmful beliefs that stigmatize indigenous peoples. Therefore, researchers must manage information and knowledge respecting First Nations’ fundamental right to determine how this information is collected, used, and disseminated.
In this session, Dr. Aaron Franks will discuss First Nations’ rights to data governance and sovereignty and talk about the First Nations principles of OCAP®.
Learning objectives:
- Be able to describe the four OCAP® principles.
- Understand First Nations’ collective right to self-determination and self-government.
- Understand the difference between asserting and respecting First Nations’ collective right to data sovereignty.
- Be aware of harms done to First Nations through colonial governance of health data.
- Be aware of First Nations initiatives in governing their health and medical data.
About the speaker:
Aaron Franks joined the First Nations Information Governance Centre in May 2018 and is currently Senior Advisor, External Relations and Strategic Initiatives there. After his first career as an actor, he completed an MA in Social Justice and Equity Studies at Brock University and a PhD in Human Geography from the University of Glasgow. He then worked with the Centre for Environmental Health Equity (CEHE) at the University of Manitoba and Queen’s University, the Centre for Indigenous Research Creation at Queen’s, SSHRC, and Universities Canada. Now he proudly supports a small team dedicated to education, training, applied research, and knowledge translation in the First Nations Principles of OCAP®, information governance, and First Nations data sovereignty at FNIGC.
Originally from Edmonton in Treaty Six territory, Aaron is of mixed British, Northern European, and Metis descent with roots in the historic Anglo-Metis communities of St. Andrews, MB, and Birch Hills, SK. He is a member of the Manitoba Metis Federation and lives on unceded Algonquin territory in Ottawa with his wife Rebecca, their children Casper and Gil, and their dog Archie.
Session 7 - DMP Assistant
A data management plan, or DMP, is a document that outlines what you will do with your data during and after a research project. As required by many funding agencies, the Canadian Tri-agencies (CIHR, SSHRC, and NSERC) released a new policy that will require researchers to submit data management plans (DMPs) as part of grant proposals. In this session, Dr. Alisa Rod and Shiloh Williams will discuss the main aspects of the DMP Assistant Tool. The DMP Assistant is a national, online, bilingual data management planning tool developed to assist researchers in preparing data management plans (DMPs).
Learning objectives:
- Define terms: data management plan, research data lifecycle, metadata.
- Describe how to use the Alliance DMP Assistant tool.
- Locate Alliance DMP templates and exemplars.
- Describe the Tri-Agency RDM Policy DMP requirement.
About the speaker:
Session 8 - Participants’ Perspectives and the Evolution of Genomic Data Sharing Policies
Sharing genomic research data is critical for translating research findings into knowledge, products, and procedures that improve human health, and according to recent studies, patients are supportive of data sharing. In this session, Dr. Majumder will discuss research participants’ perspectives on data sharing and the evolution of genomic data sharing policies.
Learning objectives:
At the end of this session, participants will be able to:
- Identify some of the sources of diversity in perspectives on genomic data sharing elicited through quantitative and qualitative research.
- Describe broad trends in U.S. National Institutes of Health genomic data sharing policies over the past two decades.
- Describe strategies that may increase participant willingness to share data.
- Discuss the spectrum of approaches to participant integration in data governance.
About the speaker:
Mary Anderlik Majumder, J.D., Ph.D., is professor of medicine in the Center for Medical Ethics and Health Policy at Baylor College of Medicine, Houston, Texas. She received an A.B. magna cum laude from Bryn Mawr College in 1985, a J.D. from Yale Law School in 1989, and a Ph.D. in Religious Studies with a specialization in ethics and biomedical ethics from Rice University in 1997. Her research interests include the ethical, legal, and social implications of new genomic and other cutting-edge technologies and ethical, policy questions related to problems of cost, quality, and access in health care, and attention to social drivers of health.
Session 9 - Indigenous Health Data and Research at ICES
The Institute for Clinical Evaluative Sciences (ICES) leads cutting-edge studies that evaluate healthcare delivery and outcomes. The institute has worked closely with Indigenous (First Nations, Inuit and Métis) partners to develop data governance and sharing agreements, aligning with the Indigenous Data Governance Principles. In this session, Graham Mecredy will discuss about Indigenous Health Data and Research at ICES.
Learning objectives:
- To understand who ICES is and how we work with Indigenous partners.
- Considerations when working with Indigenous data.
- Learn about the governance of Indigenous data.
- Discover what types of Indigenous data reside at ICES.
About the speaker:
Graham Mecredy is a staff scientist within the ICES. He completed an MSc degree in community health and epidemiology from Queen’s University, and a BSc (honours) degree in health sciences from the University of Ottawa. Graham first joined ICES in 2013 as an epidemiologist working in the Chronic Disease Program, primarily with the COPD research team.
In his current role at ICES, Graham works directly with Indigenous partners and communities on analytic projects to produce research outputs that are tailored to their unique challenges and needs. He has also been working closely with the Chiefs of Ontario, a province wide organization representing the 133 First Nations in Ontario, to produce research for First Nations communities using First Nations survey data, while following the principles of OCAP®.
Session 10 - Benefits of open data for public health
The COVID pandemic has highlighted the urgent need to recognize health data as a global public good and the need for rapid and secure data sharing. Data sharing facilitates and accelerates responses to public health needs, such as in the case of a pandemic. Despite these efforts, several persistent challenges will need to be overcome. Dr. Manuel will discuss the benefits, challenges, and processes of data sharing in public health.
Learning objectives:
- Review and discuss data sharing and access during the pandemic.
– From exceptional to woeful. - Identify the organisational and cultural barriers to data sharing during the pandemic.
– Discuss what we can all do to support FAIR data. - Review technical solutions, metadata, and standards to support FAIR data using an open-science approach.
- Case example: the Open Data Model for Public Health Environmental Science. The OHRI-developed approach to ‘make high-quality sharing data as easy as possible’ for wastewater-based surveillance. The ODM is the de facto international standard used in over 30 countries.
About the speaker:
Dr. Manuel is a Medical Doctor with a Masters in Epidemiology and Royal College specialization in Public Health and Preventive Medicine.
He completed his medical degree at Dalhousie University and studied public health and epidemiology at the University of Toronto. During his residency training he began his research career, which continues to address the same themes that arose during his earlier clinical practice.
His current practice is at the Ottawa Newcomer Clinic Centre, the health care point of entry for refugees arriving in Ottawa. He has published over 150 research papers, including papers in leading journals such as the New England Journal of Medicine and the British Medical Journal. He has held a Chair in Applied Public Health from the Canadian Institute of Health Research and has led public health research programs.
Session 11 - Clinical trials data sharing
Sharing of clinical trial data has numerous benefits for participants, science, and society as a whole. It accelerates scientific progress and improves public health by generating accessible and robust evidence on the safety and effectiveness of therapies for patients. In this session, Dr. Florian Naudet will discuss the value of clinical trial data sharing, the existing policies, and how to share clinical data.
Learning objectives:
- To recognize the potential value of clinical trial data sharing.
- To describe existing data-sharing policies.
- To criticize the current evidence for clinical trial data sharing impact.
- To acquire ten simple rules for clinical trial data sharing.
About the speaker:
Florian is a psychiatrist, meta-researcher and former post-doctoral fellow at METRICS. He’s currently teaching Therapeutics at Rennes University, France. His research interests are evaluating and developing methodological solutions to assess treatments in patients, primarily but not exclusively in psychiatric research. He has a strong interest in studying research waste and data-sharing practices. He has worked in the fields of clinical pharmacology, research methodology, and epidemiology.
Session 12 - Toward an open science ecosystem in neuroimaging
Neuroimaging studies involve complex data collection and analysis, and the resulting data can be organized and shared in different ways. Although they require the establishment of good research data management, there is no consensus on how to organize and share neuroimaging data. Dr. Russel Poldrack will discuss the features of neuroimaging data and data sharing.
Learning objectives:
- Describe the particular features of neuroimaging that make it especially amenable to data sharing.
- Describe the role of the Brain Imaging Data Structure (BIDS) in neuroimaging data sharing.
- For any particular neuroimaging data type, determine the most appropriate open data archive for sharing those data.
- Describe the major lessons learned about data sharing in the field of neuroimaging.
About the speaker:
Dr. Poldrack received his bachelor’s degree in Psychology from Baylor University and his PhD in experimental psychology from the University of Illinois at Urbana-Champaign. From 1995 to 1999, he was a postdoctoral fellow at Stanford University. Prior to his appointment at Stanford in 2014, he held faculty positions at Harvard Medical School, UCLA, and the University of Texas at Austin. He is a professor of Psychology at Stanford University, a member of the Stanford Neuroscience Institute, and director of the Stanford Center for Reproducible Neuroscience.
Session 13 - Patient preferences for data sharing and privacy considerations (intersection of law and health)
The value of sharing patient and clinical data is growing by the day. Sharing health data has potential benefits, but concerns about patient privacy call for a broad discussion. In this session, Professor Kayte Spector-Bagdady will discuss research and health data sharing and the patient perspective.
Learning objectives:
- Explain some of the potential benefits of research with health information.
- Understand some potential legal and structural challenges to fully achieving these benefits.
- Analyze implications of not addressing those challenges for patients as well as historically excluded communities.
- Discuss potential ways to improve the system.
About the speaker:
Professor Kayte Spector-Bagdady, JD, MBioethics is Interim Co-Director at the Center for Bioethics and Social Sciences in Medicine and an Assistant Professor of Obstetrics and Gynecology at the University of Michigan Medical School. At U-M she is also the Chair of the Research Ethics Committee, the ethicist on the Michigan Medicine Human Data and Biospecimen Release Committee, and a clinical ethicist. She teaches the Responsible Conduct of Research as well as Research Ethics and the Law, and is an Associate Editor of the American Journal of Bioethics.
Professor Spector was an Associate Director for President Obama’s Presidential Commission for the Study of Bioethical Issues. During that time she was a staff lead author on reports spanning the unethical STD experiments in Guatemala in the 1940s, emerging genetic and data technologies, and clinical trial design during the 2013 Ebola outbreak. She is a former Board Member of the American Society for Bioethics & Humanities.
Professor Spector received her JD and MBioethics from the University of Pennsylvania Law School and School of Medicine after graduating from Middlebury College. She completed a research fellowship in bioethics at Michigan Medicine and is a former practicing drug and device attorney.