Canadians' opinions towards COVID-19 data-sharing: a national cross-sectional survey.
Creators: name: Savic Kallesoe, Sarah A
name: Rabbani, Tian
name: Gill, Erin E
name: Brinkman, Fiona
name: Griffiths, Emma J
name: Zawati, Ma'n
name: Liu, Hanshi
name: Palmour, Nicole
name: Joly, Yann
name: Hsiao, William WL
Publisher: name: Apollo - University of Cambridge Repository
Year: 2023
Subjects: COVID-19
Epidemiology
GENETICS
Health policy
Public health
Humans
Cross-Sectional Studies
Public Opinion
Pandemics
COVID-19 Vaccines
Canada

description: Peer reviewed: True
description: Acknowledgements: We wish to show our appreciation to the members of Genome Canada’s Canadian COVID Genomics Network (CanCOGeN) for supporting this research; this project would not have been possible without the expertise and funding of CanCOGeN. We also thank the Canadian Public Health Laboratory Network (CPHLN) for their support and feedback throughout the process of this research. The BC SUPPORT UNIT has been instrumental in connecting us with their patient partners, and we thank the partners for sharing their lived experiences in healthcare research. We extend our gratitude to Dr. Lupin Battersby at Simon Fraser University for sharing her wealth of knowledge in accessible language. Thank you to Emilie Diver for her assistance in the translation of the survey. Finally, we would like to acknowledge and thank Nina Glassford and Jason Allsopp at Léger for their help in launching the data collection for this project.
description: OBJECTIVES: COVID-19 research has significantly contributed to pandemic response and the enhancement of public health capacity. COVID-19 data collected by provincial/territorial health authorities in Canada are valuable for research advancement yet not readily available to the public, including researchers. To inform developments in public health data-sharing in Canada, we explored Canadians' opinions of public health authorities sharing deidentified individual-level COVID-19 data publicly. DESIGN/SETTING/INTERVENTIONS/OUTCOMES: A national cross-sectional survey was administered in Canada in March 2022, assessing Canadians' opinions on publicly sharing COVID-19 datatypes. Market research firm Léger was employed for recruitment and data collection. PARTICIPANTS: Anyone greater than or equal to 18 years and currently living in Canada. RESULTS: 4981 participants completed the survey with a 92.3% response rate. 79.7% were supportive of provincial/territorial authorities publicly sharing deidentified COVID-19 data, while 20.3% were hesitant/averse/unsure. Datatypes most supported for being shared publicly were symptoms (83.0% in support), geographical region (82.6%) and COVID-19 vaccination status (81.7%). Datatypes with the most aversion were employment sector (27.4% averse), postal area (26.7%) and international travel history (19.7%). Generally supportive Canadians were characterised as being ≥50 years, with higher education, and being vaccinated against COVID-19 at least once. Vaccination status was the most influential predictor of data-sharing opinion, with respondents who were ever vaccinated being 4.20 times more likely (95% CI 3.21 to 5.48, p=0.000) to be generally supportive of data-sharing than those unvaccinated. CONCLUSIONS: These findings suggest that the Canadian public is generally favourable to deidentified data-sharing. Identifying factors that are likely to improve attitudes towards data-sharing are useful to stakeholders involved in data-sharing initiatives, such as public health agencies, in informing the development of public health communication and data-sharing policies. As Canada progresses through the COVID-19 pandemic, and with limited testing and reporting of COVID-19 data, it is essential to improve deidentified data-sharing given the public's general support for these efforts.