Essential requirements for the governance and management of data trusts, data repositories, and other data collaborations.

Introduction: Around the world, many organisations are working on ways to increase the use, sharing, and reuse of person-level data for research, evaluation, planning, and innovation while ensuring that data are secure and privacy is protected. As a contribution to broader efforts to improve data governance and management, in 2020 members of our team published 12 minimum specification essential requirements (min specs) to provide practical guidance for organisations establishing or operating data trusts and other forms of data infrastructure. Approach and Aims: We convened an international team, consisting mostly of participants from Canada and the United States of America, to test and refine the original 12 min specs. Twenty-three (23) data-focused organisations and initiatives recorded the various ways they address the min specs. Sub-teams analysed the results, used the findings to make improvements to the min specs, and identified materials to support organisations/initiatives in addressing the min specs. Results: Analyses and discussion led to an updated set of 15 min specs covering five categories: one min spec for Legal, five for Governance, four for Management, two for Data Users, and three for Stakeholder & Public Engagement. Multiple changes were made to make the min specs language more technically complete and precise. The updated set of 15 min specs has been integrated into a Canadian national standard that, to our knowledge, is the first to include requirements for public engagement and Indigenous Data Sovereignty. Conclusions: The testing and refinement of the min specs led to significant additions and improvements. The min specs helped the 23 organisations/initiatives involved in this project communicate and compare how they achieve responsible and trustworthy data governance and management. By extension, the min specs, and the Canadian national standard based on them, are likely to be useful for other data-focused organisations and initiatives.

Essential requirements for establishing and operating data trusts: practical guidance co-developed by representatives from fifteen canadian organizations and initiatives.

INTRODUCTION: Increasingly, the label "data trust" is being applied to repeatable mechanisms or approaches to sharing data in a timely, fair, safe, and equitable way. However, there is an absence of practical guidance regarding how to establish and operate a data trust. AIM AND APPROACH: In December 2019, the Canadian Institute for Health Information and the Vector Institute for Artificial Intelligence convened a working meeting of 19 people representing 15 Canadian organizations/initiatives involved in data sharing, most of which focus on public sector health data. The objective was to identify essential requirements for the establishment and operation of data trusts in the Canadian context. Preliminary requirements were discussed during the meeting and then refined as authors contributed to this manuscript. RESULTS: Twelve minimum specification requirements ("min specs") for data trusts were identified. The foundational min spec is that data trusts must meet all legal requirements, including legal authority to collect, hold or share data. In addition, there was agreement that data trusts must have (i) an accountable governing body to ensure that the data trust achieves its stated purpose and is transparent, (ii) comprehensive data management including clear processes and qualified individuals responsible for the collection, storage, access, disclosure and use of data, (iii) training and accountability requirements for all data users and (iv) ongoing public and stakeholder engagement. CONCLUSIONS: Practical guidance for the establishment and operation of data trusts was articulated in the form of 12 min specs requirements. The 12 min specs are a starting point. Future work to refine and strengthen them with members of the public, companies, and additional research data stakeholders from within and outside of Canada, is recommended.

Pivoting data and analytic capacity to support Ontario's COVID-19 response.

Introduction: Health care systems have faced unprecedented challenges due to the COVID-19 pandemic. Access to timely population-based data has been vital to informing public health policy and practice. Methods: We describe how ICES, an independent not-for-profit research and analytic institute in Ontario, Canada, pivoted existing research infrastructure and engaged health system stakeholders to provide near real-time population-based data and analytics to support Ontario's COVID-19 pandemic response. Results: Since April 2020, ICES provided the Ontario COVID-19 Provincial Command Table and public health partners with regular and ad hoc reports on SARS-CoV-2 testing and COVID-19 vaccine coverage. These reports: 1) helped identify congregate care/shared living settings that needed testing and prevention efforts early in the pandemic; 2) provided early indications of inequities in testing and infection in marginalized neighbourhoods, including areas with higher proportions of immigrants and visible minorities; 3) identified areas with high test positivity, which helped Public Health Units target and evaluate prevention efforts; and 4) contributed to altering the province's COVID-19 vaccine roll-out strategy to target high-risk neighbourhoods and helping Public Health Units and community organizations plan local vaccination programs. In addition, ICES is a key component of the Ontario Health Data Platform, which provides scientists with data access to conduct COVID-19 research and analyses. Discussion and Conclusion: ICES was well-positioned to provide rapid analyses for decision-makers to respond to the evolving public health emergency, and continues to contribute to Ontario's pandemic response by providing timely, relevant reports to health system stakeholders and facilitating data access for externally-funded COVID-19 research.

Strategic analytics: towards fully embedding evidence in healthcare decision-making.

Cancer Care Ontario (CCO) has implemented multiple information technology solutions and collected health-system data to support its programs. There is now an opportunity to leverage these data and perform advanced end-to-end analytics that inform decisions around improving health-system performance. In 2014, CCO engaged in an extensive assessment of its current data capacity and capability, with the intent to drive increased use of data for evidence-based decision-making. The breadth and volume of data at CCO uniquely places the organization to contribute to not only system-wide operational reporting, but more advanced modelling of current and future state system management and planning. In 2012, CCO established a strategic analytics practice to assist the agency's programs contextualize and inform key business decisions and to provide support through innovative predictive analytics solutions. This paper describes the organizational structure, services and supporting operations that have enabled progress to date, and discusses the next steps towards the vision of embedding evidence fully into healthcare decision-making.

Regulation and oversight of independent health facilities in Canada.

Independent health facilities ("IHFs") are an important part of Canada's health care system existing at the interface of public and private care. They offer benefits to individual patients and the public at large, such as improved access to care, reduced wait times, improved choice in the delivery of care, and more efficient use of health care resources. They can also provide physicians greater autonomy, control of resources, and opportunity for profit compared to other practice settings, particularly because IHFs can deliver services outside of publicly-funded health care plans. IHFs also present challenges, particularly around quality of care and patient safety, and the potential to breach the principles of "Medicare" under the Canada Health Act. Various measures are in place to address these challenges, while still enabling the benefits IHFs can offer. IHFs are primarily regulated and overseen at the provincial level through legislation, regulations and provincial medical regulatory College by-laws. Health Canada is responsible for administering the overarching framework for "Medicare". Oversight and regulatory provisions vary across Canada, and are notably absent in the Maritime provinces and the territories. This article provides an overview of specific provisions related to IHFs across the country and how they can co-exist with the Canada Health Act.

Effectiveness of an HIV prevention program for secondary school students in Mongolia.

PURPOSE: To evaluate the effectiveness of a 3-year human immunodeficiency virus (HIV) prevention program for adolescents attending secondary school in Mongolia. METHODS: Comparisons of knowledge, attitudes, self-efficacy and safe sex practices of grade 10 students from schools with a peer education prevention program to grade 10 students from schools without the intervention. Peer education programs were launched in 2000 across Mongolia. In 2004, survey data was collected among 720 randomly selected students from eight schools with the peer education prevention program and compared with those of 647 students from eight schools without this intervention. Data was collected in Ulaanbaatar and three Mongolian provinces and analyzed using multilevel regression methods. RESULTS: Students of schools with the program were statistically significantly more knowledgeable, had less traditional attitudes, and had greater awareness of their self-efficacy in regards to HIV and sexual health. Students from schools with the peer education program were more likely to practice safe sex, though the difference was not statistically significant. However, safe sex practice was found to be statistically significantly safer in a subset of schools that had small teams of peer educators. CONCLUSION: Adolescents in Mongolia are sexually active and at risk for infection with HIV and other STIs. Peer education programs, particularly those that are managed by small teams, appear effective and should be implemented more broadly.

Two-year follow-up of noncontact holmium laser thermokeratoplasty for the correction of low hyperopia.

PURPOSE: To summarize the 2-year results of laser thermal keratoplasty with a holmium:yttrium-aluminum-garnet (Ho:YAG) laser and the Sunrise Corneal Shaping System and assess the procedure's safety, efficacy and predictability in correcting hyperopia in a phase III clinical intervention case series. METHODS: The Ho:YAG laser was used to correct low hyperopia (manifest spherical equivalent of +0.75 to +2.50 dioptres [D], with manifest cylinder of 1.00 D or less) in 38 eyes of 28 patients 40 years of age or older. Laser pulses were delivered to the cornea in 2 radially placed, concentric, 8-spot rings 6.0 and 7.0 mm in diameter. The last follow-up was at 2 years. RESULTS: The preoperative uncorrected visual acuity (UCVA) at distance was less than 20/40 in 82% of the eyes and at near was less than 20/32 in 42%. At 2 years the distance UCVA was 20/40 or better in 100% of the eyes and 20/20 or better in 84%, and the near UCVA was 20/32 or better in 97% of the eyes and 20/20 or better in 8%. The difference between the preoperative and postoperative UCVA was statistically significant (p < 0.01). The correction at 2 years was within 0.50 D of that intended in 92% of the eyes and within 1.00 D in 100%. The reduction in mean spherical equivalent at 2 years was statistically significant (p < 0.0001). No loss of 2 lines or more in best-corrected visual acuity occurred after the 1st month of follow-up. INTERPRETATION: The Ho:YAG Sunrise Corneal Shaping System is safe and effective for the treatment of low hyperopia and astigmatism. It provides a predictable refractive outcome at 2 years of follow-up. However, our results show a tendency towards regression by 2 years.