Information Management Systems are the central process management and communication hub for many newborn screening programs. In late 2014, Newborn Screening Ontario (NSO) undertook an end to end assessment of its information management needs which resulted in a project to develop a flexible IS Information Systems (IS) ecosystem and related process changes. This enabled NSO to better manage its current and future work-flows and communication needs. An idealized vision of a Screening Information Management System (SIMS) was developed that was refined into enterprise and functional architectures. This was followed by the development of technical specifications, user requirements and procurement. In undertaking a holistic full product lifecycle redesign approach, a number of change management challenges were faced by NSO across the entire program. Strong leadership support and full program engagement are key for overall project success. It is anticipated that improvements in program flexibility and the ability to innovate will outweigh the efforts and costs.

A free iPhone app was designed to help parents in Ontario track their children's vaccination records. It was launched in the iTunes app store on 20 November 2012. There were 4867 downloads in the following 12 months. We observed that downloads of the app were correlated with media coverage. Usage of the app was measured by app opens and the time spent in the app per open: on average there were 53 opens per day and 126 seconds spent per open. Users expressed concerns about the privacy of health information and accessibility by people of lower socioeconomic status, who were less likely to be smartphone owners. A national version of the app is now being developed for multiple mobile phone types. There is potential to develop additional features such as mobile adverse event reporting, vaccine vial barcode scanning and integration with immunization registries. Immunization is an area in which a mobile solution is very useful.

Background The Ontario Infant Hearing Program identifies babies born with, or at risk for, permanent hearing impairment. The current method of audiometric screening may be limited in detecting forms of hearing impairment, which are clinically silent in the newborn but may become apparent in the pre-school period. Objectives To determine the prevalence of detectable CMV genomes and determine the disease allele frequencies for selected mutations in GJB2, GJB6, SLC26A and MT-RNR1 in Ontario Newborns. Methods 10,000 historical blood spots were screened to determine the first Ontario population-based data regarding the prevalence of congenital CMV and the allele frequencies of the common mutations in GJB2, GJB6, SLC26A and MT-RNR1 which are associated with hearing impairment. A 2-part assay was developed to screen newborn dry blood spots – 1) a multiplex genotyping assay based on Sequenom® iPlex technology and 2) a multiplex qPCR assay to detect and quantify CMV, as well as to detect a known deletion in GJB6. Results We detected CMV genomes in 0.6% of blood spots screened. Disease allele frequencies were determined and those for GJB2/GJB6 as well as SLC26A were found not to be in Hardy-Weinberg equilibrium (HWE), with non-assortative mating postulated to be the major contributing factor. Lastly, the population frequency of MT-RNR1 alleles responsible for sensitivity to aminoglycoside antibiotics was 1.7%. Conclusions In the future, possible implementation of newborn blood spot screening for hearing impairment would enhance the current ascertainment of infants at risk for hearing impairment and introduce an etiologic component to hearing screening in Ontario.

Background: Live vaccines have distinct safety profiles, potentially causing systemic reactions one to 2 weeks after administration. In the province of Ontario, Canada, live MMR vaccine is currently recommended at age 12 months and 18 months.Methods: Using the self-controlled case series design we examined 271,495 12 month vaccinations and 184,312 18 month vaccinations to examine the relative incidence of the composite endpoint of emergency room visits or hospital admissions in consecutive one day intervals following vaccination. These were compared to a control period 20 to 28 days later. In a post-hoc analysis we examined the reasons for emergency room visits and the average acuity score at presentation for children during the at-risk period following the 12 month vaccine.Results: Four to 12 days post 12 month vaccination, children had a 1.33 (1.29-1.38) increased relative incidence of the combined endpoint compared to the control period, or at least one event during the risk interval for every 168 children vaccinated. Ten to 12 days post 18 month vaccination, the relative incidence was 1.25 (95%, 1.17-1.33) which represented at least one excess event for every 730 children vaccinated. The primary reason for increased events was statistically significant elevations in emergency room visits following all vaccinations. There were non-significant increases in hospital admissions. There were an additional 20 febrile seizures for every 100,000 vaccinated at 12 months.Conclusions: There are significantly elevated risks of primarily emergency room visits approximately one to two weeks following 12 and 18 month vaccination. Future studies should examine whether these events could be predicted or prevented.

Though use of the controversial precautionary principle in risk management has increasingly been recommended as a guide for the construction of public policy in Canada and elsewhere, there are few data available characterizing its use in risk management by senior public policymakers. Using established survey methodology we sought to investigate the perceptions and terms of application of the precautionary principle in this important subset of individuals. A total of 240 surveys were sent out to seven departments or agencies in the Canadian government. The overall survey response rate was 26.6%, and our findings need to be interpreted in the context of possible responder bias. Of respondents, the overwhelming majority perceived the precautionary principle and the management of risk as complementary, and endorsed a role for the precautionary principle as a general guideline for all risk management decisions. However, 25% of respondents responded that the lack of clarity of the definition of the principle was a limitation to its effective use. The majority of respondents viewed their own level of understanding of the precautionary principle as moderate. Risk managers appeared to favor an interpretation of the precautionary principle that was based on the seriousness and irreversibility of the threat of damage, and did not endorse as strongly the need for cost effectiveness in the measures taken as a precaution against such threats. In contrast with its perceived role as a general guideline, the application of the precautionary principle by respondents was highly variable, with >60% of respondents reporting using the precautionary principle in one‐quarter or less of all risk management decisions. Several factors influenced whether the precautionary principle was applied with the perceived seriousness of the threat being considered the most influential factor. The overwhelming majority of risk managers felt that “preponderance of evidence” was the level of evidence required for precautionary action to be instituted against a serious negative event. Overall, the majority of respondents viewed the precautionary principle as having a significant and positive impact on risk management decisions. Importantly, respondents endorsed a net result of more good than harm to society when the precautionary principle was applied to the management of risk.