Canadians’ opinions towards COVID-19 data-sharing: a national cross-sectional survey

Abstract

ObjectivesCOVID-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/outcomesA 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.ParticipantsAnyone greater than or equal to 18 years and currently living in Canada.Results4981 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.ConclusionsThese 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.

Health data sharing attitudes towards primary and secondary use of data: a systematic review

“…Interestingly ( Table 7 ), two studies concluded that older age was associated with a higher willingness to share HD—one focused on medication records for primary purposes 93 and another focused on COVID-19 data for secondary purposes. 99 Those with higher education levels and a positive COVID-19 vaccination status showed higher support for sharing COVID-19 data for secondary uses. 99 Other data-specific factors included societal and self-stigma (in case of sharing non-psychiatric and psychiatric medication among patients with multiple sclerosis), 94 higher levels of satisfaction with the UK's NHS, personal experience of mental illness (sharing mental health illness data), 100 communication about prosocial benefit or social-life-enabling benefit of the app, and higher perceived risk of the disease (in case of sharing COVID-19 infection data to a tracing app).…”