Don’t let privacy concerns complicate necessary data sharing to combat public health threats

Health surveillance systems are key cornerstones to protecting populations from emerging public health threats. In Canada, these systems fall under shared responsibilities between local, federal, and provincial and territorial (FPT) agencies. The Public Health Agency of Canada (PHAC) creates the common elements to manage this system within a national framework to standardize data collection and voluntary sharing across provinces and territories. Provinces and territories have a lot of flexibility to implement their own policy interventions and public-health measures based on their risk assessment and context. Communicable diseases, including COVID-19, do not respect administrative boundaries. Effective surveillance depends on a national strategy to ensure that data enables the timely and accurate burden of disease estimation and identification of those at risk of infections or collateral health impacts. Case detection and burden Active SARS-CoV-2 infections are currently detected though nucleic acid-based technologies. Criteria for testing differs across provinces, making it difficult to assess COVID-19's burden nationally. Testing blood samples (serological tests) to detect the presence of antibodies can provide evidence of an immune response to infection. Antibodies to SARS-CoV-2 are not detectable for at least a week after infection, and the type of antibodies that could neutralize the virus are likely not detectable until two weeks after infection. This renders serological tests ineffective in identifying potentially infectious individuals and stopping transmission. Therefore, continued expansion of testing for the presence of virus using nucleic acid technologies will continue to be critical in the foreseeable future. Serological tests are useful as a population surveillance tool that could inform decisions around the safety of relaxing control measures. In the case of COVID-19, understanding how much of the population was infected at some prior point could inform models for the expected waves of transmission that could come once measures are relaxed. Serological surveillance is under-utilized in Canada, despite being a standard approach for vaccine-preventable diseases. The creation of the Canadian National Immunity Task force to oversee co-ordination of country-wide serological tests and to identify vulnerabilities in the population was a critical step forward. Time is needed for laboratories to validate serological technologies and for improved understanding on immunity to SARS-CoV-2 for individual and population assessment. However, it is not too early to communicate a proposed national strategy to the public to alleviate individual concerns about return-to-work mandates, as well as to ensure those who enroll in initial studies to detect antibodies are representative of the Canadian population. It is also important that clear guidance on legal and ethical considerations for the use and interpretation of results is consistent across provinces. Infectious diseases often have associated stigmas and community engagement is important to gain public trust that immune status will not be used to marginalize sub-groups. Who is at risk and collateral health impacts PHAC’s interim case report form suggests public health authorities should collect risk-factor information from patients, including gender, age, Indigenous identity, and co-morbidities. These data are often missing or lagging in provincial reporting to PHAC. Guidance on collecting data on collateral health impacts, those indirectly attributable to COVID-19, are lacking. Steep declines in emergency room visits in Canada have been reported and raise concerns about delayed presentation to emergency rooms for immediately life-threatening conditions. Monitoring, in real-time, declines in routine immunization coverage, impacts of decreased primary care on health outcomes, or impacts of interventions that increase isolation on mental health, particularly in older populations, can be more challenging. Data will also be needed to monitor the impact of the economic crisis on population health. Canada is not short of expertise in developing appropriate indicators, and advances in data science now make these enhancements more feasible for timely and consistent collection across provinces. Concerns over privacy have often complicated the timeliness and sharing of data needed to assess risk for adverse health outcomes, and privacy zealots in Canada have challenged public health innovations, as in other countries. These data are critical as provinces set their own plans to relax public health measures. Strengthening national surveillance standards will be a strong step forward to improving timeliness, effectiveness, health equity, engagement, and transparency of the FPT pandemic response for Canada. The challenge will be to enforce uniform standards whilst still enabling local flexibility. Shaza Fadel is an assistant professor, Dalla Lana School of Public Health, Centre for Vaccine Preventable Disease, University of Toronto; Sara Allin is an assistant professor, North American Observatory on Health Systems and Policies, Institute of Health Policy Management and Evaluation, Dalla Lana School of Public Health, University of Toronto; and Natasha Crowcroft is director, Centre for Vaccine Preventable Diseases, a professor, Dalla Lana School of Public Health and Laboratory Medicine and Pathobiology, and adjunct scientist ICES and senior fellow at Massey College, University of Toronto. The Hill Times

Don’t let privacy concerns complicate necessary data sharing to combat public health threats

Concerns over privacy have often complicated the timeliness and sharing of data needed to assess risk for adverse health outcomes, and privacy zealots in Canada have challenged public health innovations.

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