ACTIVE RESEARCH, DIGITAL HEALTH, KNOWLEDGE TRANSLATION, SURVEILLANCE

Health Data Dialogues: Supporting Data Stewards for the Future of Health Care

Research Summary

Health Data Dialogues is a knowledge mobilization and outreach initiative designed to support thought leadership among individuals working across the ecosystem of digital health data collection and use.

The covid-19 pandemic has sparked concerns around the ethics of digital surveillance and the collection and use of health data through contact tracing applications, drones, mobile phone tracking, and a plethora of other strategies implemented in Canada and across the globe. Given the rapid acceleration in the digital health agenda both nationally and globally, there is an urgent need for critical reflection on equitable and ethical health data use.

In our consultations with industry advisors from hospitals, tech start-ups, research, and government ecosystems across healthcare, one of the biggest challenges raised was a lack of shared language and understanding of health data and its use as well as a lack of opportunity to engage with these topics. These Health Data Dialogues will provide such opportunities and invite people across multiple sectors to learn, reflect on, and co-create knowledge regarding the ethical and equitable collection and use of health data. This space will provide the structures and supports necessary to foster the growth of leaders in the stewardship of health data.

Our overlapping objectives are to translate the knowledge produced through our research in ways that are relevant and accessible to people across the ecosystem, and to further co-create knowledge with a community of thinkers who come together to consider questions of health data collection, use, and the intended and unintended consequences of digital health surveillance and health data use. The outcomes of these conversations will be crucial as Canada and other countries grapple with the accelerated pace of health data collection, integration, and use.

Read more about the research that underpins this work here.

Learn more about our first learning series and join us via our events page.

Resources & Links

Team/Advisors

Bibi Imre-Millei

Master’s student, Queen’s University Project coordinator, Gender Lab at the Centre for International and Defence Policy

Bibi is a Master’s student at Queen’s University. She has researched the use of swarm drones in surveillance as well as the use of biometric data in Iraq

and Afghanistan. Bibi also works as a project coordinator at the Gender Lab at the Centre for International and Defence Policy.

Dr. Anita Kothari

Associate professor, Arthur Labatt Family School of Nursing, Western University

Dr. Kothari is an associate professor at the Arthur Labatt Family School of Nursing at Western University. Her expertise is in health research methodology,

population health, and health policy and services. She has partnered research alignments in the area Public Health systems and services.

Dr. Bradley Hiebert

Research Associate, Arthur Labatt Family School of Nursing, Western University

Dr. Hiebert is a Research Associate in the Arthur Labatt Family School of Nursing at Western University focusing on rural health, masculinity, and how

digital health technologies (drones) impact health and health information behaviours.

Dr. Jacob Shelley

Assistant professor, Faculty of Law and School of Health Studies, Western University Co-director of the Health Ethics, Law and Policy (HELP) Lab

Dr. Shelley is an assistant professor jointly appointed to the Faculty of Law and School of Health Studies. His interest is on the use of law in the prevention

of disease; currently investigating the policy responses to COVID-19. He is a co-director of the Health Ethics, Law and Policy (HELP) Lab along with Dr. Maxwell Smith.

Dr. Jacquie Burkell

Associate Vice-President (Research) Associate professor in the Faculty of Information and Media Sciences, Western University

Dr. Burkell is the associate Vice-President of Research at Western University and an associate professor in the Faculty of Information and Media Sciences

with a research focus on the social impact of technology and examines how technological mediation changes social interaction and information behaviour.

Dr. Joanna Redden

Assistant professor, Faculty of Information and Media Studies, Western University Co-director, Data Justice Lab

Dr. Redden is an assistant professor with the Faculty of Information and Media Studies at Western University. She is co-director of the Data Justice Lab and works

on projects mapping the implications of predictive and automated systems and redressing data harms.

Dr. Jodi Hall

Professor, School of Nursing, Western-Fanshawe program

Dr. Hall is a professor in the School of Nursing, Western-Fanshawe program. Her expertise is on the impact of surveillance, policing, and criminalization on

oppressed communities.

Dr. Lorie Donelle

Associate professor and research chair, Arthur Labatt Family School of Nursing, Western University

Lorie Donelle was inspired to launch Health in All Data from her research across health literacy, equity, and digital health.

She is an Associate Professor at Western University in the Arthur Labatt Family School of Nursing and a Scientist with the Lawson Health Research Institute in London Ontario and is an inaugural member of Fellows of the Canadian Academy of Nursing (FCAN). She holds an endowed research chair – the Arthur Labatt Family Chair in Nursing focused on digital health. Dr. Donelle’s research addresses health promotion specific to issues of health & digital health literacy(s), social justice, and digital health. Her research investigates technology-enabled models of healthcare and the relationships between health information technologies and client/clinician health practices. Dr. Donelle contributes to International and national advisory committees for health literacy and digital health.

Dr. Maxwell Smith

Bioethicist and assistant professor, School of Health Studies, Western University Co-Chair, Ethics Table, Ontario’s COVID-19 Health System Response

Dr. Smith is a bioethicist and assistant professor in the School of Health Studies. He currently serves as the Co-Chair of the Ethics Table within Ontario’s COVID..

Dr. Smith is a bioethicist and assistant professor in the School of Health Studies. He currently serves as the Co-Chair of the Ethics Table within Ontario’s COVID-19 Health System Response and is a member of WHO’s Working Group on Ethics and COVID-19.

Dr. Saverio Stranges

Professor and Chair of Epidemiology and Biostatistics, Schulich School of Medicine

Dr. Stranges is a professor and Chair of Epidemiology and Biostatistics (Schulich School of Medicine), is a public health physician and epidemiologist

with expertise in population-based studies and global health.

Dr. Tommy Cooke

Postdoctoral fellow, Surveillance Studies Centre, Queen’s University

Dr. Cooke is a postdoctoral fellow at the Surveillance Studies Centre at Queen’s University.

He is leading a multidisciplinary collaboration recording and analyzing the lifecycle of location metadata on smartphones.

Leigha Comer

PhD student, York University

Leigha is a Research Associate at Western University and supports the Health in All Data team with knowledge translation projects.

Leigha is a PhD student at the Sociology program at York University where she researches chronic pain, drug use, and the impacts of panic around opioid-related harms on people with chronic pain and their access to opioids for pain management.

Mehak Sawhney

PhD candidate, McGill University

Mehak is a PhD candidate at McGill University who has worked with the Centre for the Study of Developing Societies and the MS Merian-R.

Tagore International Centre of Advanced Studies in India. Her work focuses on urban soundscapes, sound, and surveillance through machine learning.

Ozge Girgin

PhD candidate, Queen’s University Research assistant, Surveillance Studies Centre

Ozge is a PhD candidate at Queen’s University and a research assistant with the Surveillance Studies Centre.

She researches the use of digital technology in Turkey and, most recently, has been investigating the use of mobile health applications by young adults in Turkey during the COVID-19 pandemic.

Spencer Huesken

PhD candidate, Queen’s University Research associate, Community Health and Social Innovation Hub

Spencer is a PhD candidate at Queen’s University and a research associate with the Community Health and Social Innovation Hub.

Spencer researches the intersections between media, information, Big Data, and meaning making in relation to health and labour.

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