It takes place on TUESDAY, APRIL 25 via Zoom and in-person at the Fairmont Winnipeg. REGISTER HERE
Our keynote speaker is Rachel Plachcinski, a researcher based at Oxford University who specializes in parent, patient and public involvement in health care. Other speakers include Dr. Kim McGrail, Scientific Director of HDRN Canada, Julia Burt, HDRN Canada's Public Engagement Fellow and Dr. Amy Freier, who leads the Inclusion, Diversity, Equity and Accessibility Team at HDRN Canada. Members of HDRN Canada's Public Advisory Council will also participate in the event.
If you have questions, please view the FAQ below. For other inquiries, please email firstname.lastname@example.org.
AGENDA – HEALTH DATA FOR ALL OF US
8:30 am (CST)
In-person event only
Frank Gavin, HDRN Canada Public Advisory Council Chair
Public Involvement & Engagement in Data Intensive Research
Rachel Plachcinski, parent, patient and public involvement researcher & consultant
15 MINUTE BREAK
The Health Data Ecosytem & HDRN Canada
Dr. Kim McGrail, HDRN Canada Scientific Director
1 HOUR LUNCH
Facilitated Discussion – Patient and Public Priorities for HDRN Canada/Data Intensive Research
Dr. Amy Freier, HDRN Canada IDEA Team Lead & Denis Boutin, HDRN Canada Public Advisory Council Member
Public perspectives on acceptable uses of health data
Julia Burt, HDRN Canada Public Engagement Fellow, Roxanne Dault, Research Officer, Dr.Annabelle Cumyn, Associate Professor, Université de Sherbrooke & Dr. P. Alison Paprica, Adjunct Professor, University of Toronto
15 MINUTE BREAK
Dr. Nathan Nickel, HDRN Canada Executive Member (Moderator), Hani Ataan Al-Ubeady, HDRN Canada Public Advisory Council Member, Stephanie Sinclair, Research Coordinator, Maureen Smith, HDRN Canada Public Advisory Council Member
Rachel Plachcinski is a researcher based at Oxford University who specializes in parent, patient and public involvement in health care. an independent consultant in parent, patient and public involvement in health research. Rachel holds a Master of Science in Psychological Approaches to Health from the University of Leeds. Full bio
Hani A. Al-Ubeady is a member of the HDRN Canada Public Advisory Council. He has extensive experience working with diverse populations in Manitoba and has served the settlement and integration sector for over 20 years. Hani is a Certified Canadian Counsellor and marriage and family therapist as well as a regulated Immigration Consultant. Full bio
Denis Boutin is a member of the HDRN Canada Public Advisory Council. "He advocates for and helps facilitate the integration of patients in research, having become involved in health research in 2015 as a research participant. A retired computer engineer, Denis is involved in patient-partner research groups, as well as two research projects with Diabetes Action Canada. Full bio
Julia Burt is HDRN Canada’s Public Engagement Fellow, working closely with the Public Advisory Council to accelerate HDRN Canada’s work and progress on meaningful public engagement. Prior to this role, she was the Patient Engagement and Training and Capacity Lead with the NL SPOR SUPPORT Unit. Julia holds a Master’s of Human Nutrition from McGill University.
Dr. Annabelle Cumyn is a member of HDRN Canada's Public Engagement Working Group and an Associate Professor at the Faculty of Medicine and Health Sciences at the Université de Sherbrooke.An internist with a specialization in obstetric medicine, Annabelle has been involved with the CLARET project at GRIIS since 2017. Full bio
Roxanne Dault is a Research Officer with the Interdisciplinary Research Group in Health Informatics (GRIIS) and the lead of the consent component. She specializes in patient-oriented research and knowledge transfer. Roxanne coordinates CLARET, a research project that looks at how citizens can give consent to the use of their health data for research purposes. Full bio
Dr. Amy Freier is the Inclusion Diversity Equity and Accessibility Team Lead for HDRN Canada. She holds a Master of Arts degree in Cultural Studies from Queen’s University and a PhD in Media Studies from Western University. Amy’s research focuses on health equity, data equity, data curation, and human rights. Full bio
Frank Gavin is the Chair of HDRN Canada’s Public Advisory Council. Frank is a retired college instructor and an experienced patient advisor who volunteered for a range of health care organizations, including Sick Kids Hospital, Child-Bright and The Canadian Agency for Drugs and Technologies in Health (CADTH), before getting involved with HDRN Canada in 2018. Full bio
Dr. Kimberlyn McGrail is the CEO and Scientific Director of HDRN Canada. She is a Professor in the UBC School of Population and Public Health at the University of British Columbia, Director of Research for UBC Health, and Scientific Director of Population Data BC. She was part of the Expert Advisory Group for the pan-Canadian Health Data Strategy and is currently a member of the OECD's Global Partnership for AI. Full bio
Dr. Nathan Nickelis a member of the HDRN Canada Executive. He is the Director of the Manitoba Centre for Health Policy, an Associate Professor of Community Health Sciences at the University of Manitoba, Co-Director of the Manitoba Interdisciplinary Lactation Centre, and Scientist at the Children’s Hospital Research Institute of Manitoba. Nathan is an applied population health scientist who uses whole-population administrative data to conduct health and social policy research. Full bio
Dr. P. Alison Paprica is an Adjunct Professor and Senior Fellow at the University of Toronto's Institute for Health Policy, Management and Evaluation. Previously, Alison held executive roles with HDRN Canada and ICES, and she was the Inaugural Vice President, Health Strategy & Partnerships at the Vector Institute and the Director responsible for up to $60 million annual health research investment at the Ontario Ministry of Health. Full bio
Stephanie Sinclair is an Anishinaabe woman from Sandy Bay First Nation. She is a mother of two children and the daughter of a residential school survivor. Stephanie works at the First Nation Health and Social Secretariat of Manitoba as a Data Sovereignty coordinator. Stephanie is also completing her Ph.D. in Native Studies at the University of Manitoba. Stephanie has worked in various positions over the last 20 years with the goal of improving health and mental wellness services for First Nations people.
Maureen Smith is a member of the HDRN Canada Public Advisory Council. Maureen has a long history of collaboration with the health care system subsequent to a rare disease diagnosis in childhood. For over 20 years, Maureen has brought the patient and citizen perspective to provincial, pan-Canadian, and international advisory groups and committees on topics such as research ethics, rare disease policy and involvement in clinical trials. Full bio
Yes, but pre-registration is required. Click here to register. Lunch will be provided to those attending in person at the Fairmont Winnipeg.
Is this a bilingual event?
Yes, Live English-French translation will be provided in-person and online via Zoom.
What is the purpose of the forum?
The forum will share information about the work of HDRN Canada and about the health data ecosystem in Canada and gather ideas and concerns, and identify the priorities, of all participants about the collection and use of health data. By the end of the day, we hope to arrive at some actions to take, including ways to broaden and deepen engagement with the public and particular publics or communities.
What kind of health data do HDRN Canada member organizations collect?
HDRN Canada's 14 member organizations collect only de-identified or anonymized data, which is data that cannot be traced back to individuals.
Will this forum discuss how I can access my personal health data?
No. Although issues related to individuals accessing their own health data are important, they will not be addressed at the forum.
Where can I find more information about HDRN Canada's Public Advisory Council?
Learn more about how HDRN Canada works with and engages the public here.
The conference is planned to be in a hybrid format. The planning committee is paying close attention to guidelines from the Provincial Government and the Provincial Health Officer (PHO) regarding gatherings and events. Should restrictions related to events, vaccination, and/or masks be reinstated, we will adapt our plans accordingly. We recommend all in-person attendees be vaccinated and boosted, and request attendees self-monitor for symptoms and self-test prior to arrival. Please do not attend if you have a positive test, or if you develop symptoms associated with COVID-19.