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ABSTRACTObjectivesHigh profile initiatives and reports highlight the potential benefits that could be realized by increasing access to health data, but do members of the general public share this view? The objective was to gain insight into the general public's attitudes toward users and uses of administrative health data.
ApproachIn fall 2015, four professionally-moderated focus groups with a total of 31 Ontario participants were conducted; two in Thunder Bay, two in Toronto. Participants were asked to review and comment on: general information about research based on linked administrative health data, a case study and models through which various users might use administrative health data.
ResultsSupport for research based on linked administrative health data was strongest when people agreed with the purposes for which studies were conducted. The main concerns related to the security of personal data generally (e.g., Canada Revenue Agency hacking incidents were noted) and potentially inappropriate uses of health data, particularly by the private sector (e.g., strong reservations about studies done solely or primarily with a profit motive). Participants were reassured when provided with information about the process for removing or coding identifying information from health data, and about the oversight provided by the Information and Privacy Commissioner of Ontario. However, even when fully informed of privacy and security safeguards, participants still felt that risks unavoidably increase when there are more people and organizations accessing data.
ConclusionsMembers of general public were generally supportive of research based on linked administrative health data but with conditions, particularly when the possibility of private sector research was discussed. Notably, and citing security concerns, focus group participants preferred models that had a limited number of individuals or organizations accessing data.

Population data science [1] researchers are not alone in recognizing the value of health and health-related data. In the era of big data, and with advent of machine learning and other artificial intelligence methods, organizations around the world are actively working to turn data into knowledge, and, in some cases, profit. The media and members of the public have taken notice, with high profile news stories about data breaches and privacy concerns [2-4] alongside some stories that call for increased use of data [5,6]. In response, public and private sector data-holding organizations and jurisdictions are turning their attention to policies, processes and regulations intended to ensure that personal data are used in ways that that the public supports. In some cases, these efforts include involving "publics" in decisions about data, such as using patient and lay person advice and other inputs to help shape policies [7-10].

Many health systems and research institutes are interested in supplementing their traditional analyses of linked data with machine learning (ML) and other artificial intelligence (AI) methods and tools. However, the availability of individuals who have the required skills to develop and/or implement ML/AI is a constraint, as there is high demand for ML/AI talent in many sectors. The three organizations presenting are all actively involved in training and capacity building for ML/AI broadly, and each has a focus on, and/or discrete initiatives for, particular trainees.
P. Alison Paprica, Vector Institute for artificial intelligence, Institute for Clinical Evaluative Sciences, University of Toronto, Canada. Alison is VP, Health Strategy and Partnerships at Vector, responsible for health strategy and also playing a lead role in "1000AIMs" – a Vector-led initiative in support of the Province of Ontario's \$30 million investment to increase the number of AI-related master's program graduates to 1,000 per year within five years.
Frank Sullivan, University of St Andrews Scotland. Frank is a family physician and an associate director of HDRUK@Scotland. Health Data Research UK \url{https://hdruk.ac.uk/} has recently provided funding to six sites across the UK to address challenging healthcare issues through use of data science. A 50 PhD student Doctoral Training Scheme in AI has also been announced. Each site works in close partnership with National Health Service bodies and the public to translate research findings into benefits for patients and populations.
Yin Aphinyanaphongs – INTREPID NYU clinical training program for incoming clinical fellows. Yin is the Director of the Clinical Informatics Training Program at NYU Langone Health. He is deeply interested in the intersection of computer science and health care and as a physician and a scientist, he has a unique perspective on how to train medical professionals for a data drive world. One version of this teaching process is demonstrated in the INTREPID clinical training program. Yin teaches clinicians to work with large scale data within the R environment and generate hypothesis and insights.
The session will begin with three brief presentations followed by a facilitated session where all participants share their insights about the essential skills and competencies required for different kinds of ML/AI application and contributions. Live polling and voting will be used at the end of the session to capture participants' view on the key learnings and take away points.
The intended outputs and outcomes of the session are:

Participants will have a better understanding of the skills and competencies required for individuals to contribute to AI applications in health in various ways
Participants will gain knowledge about different options for capacity building from targeted enhancement of the skills of clinical fellows, to producing large number of applied master's graduates, to doctoral-level training

After the session, the co-leads will work together to create a resource that summarizes the learnings from the session and make them public (though publication in a peer-reviewed journal and/or through the IPDLN website)

Many countries around the world are creating COVID-19 trial datasets and databases of COVID-19-related data such as test results that cover entire populations. It is our strong recommendation, and sincere hope, that these data assets will be brought together through record linkage so that their scientific value and impact for society can be amplified. We call on trialists, data stewards and research funders to work together so that prospective linkage of trial data to medical databases becomes the norm, starting with COVID-19 trials.

Introduction"The Consensus Statement on Public Involvement and Engagement with Data-Intensive Health Research", recent data breaches, and growing public awareness and controversy associated with secondary use of health data all highlight the need to understand what data sharing the public will support, under what circumstances, for what purposes and with whom.
Objectives and ApproachThis symposium explores methods and findings from public engagement at all stages of data linkage research, beginning with short presentations (~6-8 minutes) on recent work:

Mhairi Aitken: Consensus Statement - principles and an application using deliberative workshops to explore public expectations of public benefits from data-intensive health research
Annette Braunack-Mayer/Felicity Flack: Surveys and citizens' juries: Sharing government data with private industry
Kim McGrail/Mike Burgess: Public deliberations on cross-sector data linkage, and combining public and private sources of data
Alison Paprica: Plain language communication informed by Health Data Research Network Canada's Public Advisory Council.

Half the session will be spent interacting with the audience through live polling. The moderator will post a series of poll question such as "What is the most important thing for meaningful public engagement?" to prompt audience thinking on the topic. After the audience responses are revealed, panelists will share their own views about what they think is the best answer, and the main reason(s) behind their choice. The last 10-15 minutes of the session will be reserved for Q&A and dialogue with the audience.
ResultsWe anticipate that this approach will surface emerging and tacit knowledge from presenters and the audience, and augment that through generative discussion.
Conclusion / ImplicationsSession attendees will leave with a better understanding of the current state of knowledge and ways to talk about that understanding with other researchers, policy makers and the public.

IntroductionCanadian provincial health systems have a data advantage – longitudinal population-wide data for publicly funded health services, in many cases going back 20 years or more. With the addition of high performance computing (HPC), these data can serve as the foundation for leading-edge research using machine learning and artificial intelligence.
Objectives and ApproachThe Institute for Clinical Evaluative Sciences (ICES) and HPC4Health are creating the Ontario Data Safe Haven (ODSH) – a secure HPC cloud located within the HPC4Health physical environment at the Hospital for Sick Children in Toronto. The ODSH will allow research teams to post, access and analyze individual datasets over which they have authority, and enable linkage to Ontario administrative and other data. To start, the ODSH is focused on creating a private cloud meeting ICES' legislated privacy and security requirements to support HPC-intensive analyses of ICES data. The first ODSH projects are partnerships between ICES scientists and machine learning.
ResultsAs of March 2018, the technological build of the ODSH was tested and completed and the privacy and security policy framework and documentation were completed. We will present the structure of the ODSH, including the architectural choices made when designing the environment, and planned functionality in the future. We will describe the experience to-date for the very first analysis done using the ODSH: the automatic mining of clinical terminology in primary care electronic medical records using deep neural networks. We will also present the plans for a high-cost user Risk Dashboard program of research, co-designed by ICES scientists and health faculty from the Vector Institute for artificial intelligence, that will make use of the ODSH beginning May 2018.
Conclusion/ImplicationsThrough a partnership of ICES, HPC4Health and the Vector Institute, a secure private cloud ODSH has been created as is starting to be used in leading edge machine learning research studies that make use of Ontario's population-wide data assets.

IntroductionThere is widespread enthusiasm to improve health through the application of artificial intelligence and machine learning (AI/ML) methods to large population-level health datasets. Achieving this may require successful collaboration between institutions as well as between computer scientists (CS), machine learning researchers (MLR) and health service researchers (HSR). The objective is to describe lessons learned in creating the Health Artificial Data and Analysis Platform (HAIDAP) in Ontario, Canada.
Objectives and ApproachA partnership between a HSR institute (ICES), an AI/ML institute (Vector) and a high-performance computing center (HPC4H) was initiated in 2017 to enable the application of AI/ML methods to population-level health data for the province of Ontario (population 14M). The HAIDAP was launched in 2019. We describe lessons learned (and being learned) following the HAIDAP's launch.
ResultsMajor learnings include: 1)importance of institutional partnerships and alignment with institutional strategies; 2)potential of joint institutional risk-sharing models; 3)need for scientific collaborations bridging disciplines around joint research projects; 4)sensitivity to different scientific cultures (e.g., academic prestige of conference proceedings for MLR vs journal publications for HSR; traditional statistical vs. ML model assumptions); 5)differences in research timeline expectations; 6)different experience with and expectations for access to de-identified routinely collected data (e.g., need for research ethics committee project approvals and privacy impact assessments); 7)developing data access models that enable greater flexibility (e.g. importing code or using open source tools); 8) broadening data access models to allow modern high-dimensional exploratory data analysis; 9)obtaining support of information/privacy regulator; 10)hardware is (relatively) easy part compared to other success factors.
Conclusion / ImplicationsThe HAIDAP has enabled multi-disciplinary collaborations and novel AI/ML research of Ontario's population-level health data. Collectively we have learned that additional effort is required to develop systems and processes enabling more efficient access to data and analytic tools for the analysis of administrative health data.

IntroductionResearchers and decision makers from across Canada use linked provincial administrative data for analysis and to address research and policy questions. Currently there are several impediments to working harmoniously across provincial boundaries. A group of academic and policy researchers are working to address these multi-jurisdictional obstacles.
Objectives and ApproachResearchers and data organizations from across Canada are working together as the Pan-Canadian Real-World Health Data Network PRHDN). PRHDN aims to: (1) create harmonized data, algorithms and analytic protocols, and (2) link administrative databases to other types of data, including electronic medical records, clinical trials records, "omics data" and records from pan-Canadian cohort studies. PRHDN's vision is to construct a unified, documented infrastructure to advance pan-Canadian population-based research and analysis. This presentation incorporates material that is part of PRHDN's response to a funding call to create national, collaborative infrastructure.
ResultsScientists and staff at PRHDN organizations will create three main categories of infrastructure: 1) Algorithms: Reusable processes, ideally in the form of documented code, which implement a common approach or definition, e.g. to define cases or to create derived variables; 2) Harmonized Common Data: Based on the Sentinel model, we will establish a standardized subset of harmonized common data that are analysis-ready; 3) Common Analytic Protocols: Complementing work of the Canadian Network for Observational Drug Effect Studies (CNODES), we will establish processes for distributed analysis with common analytic protocols and meta-analysis of results to provide pan-Canadian estimates. Source data would remain within jurisdictional boundaries and only aggregate results would be pooled across jurisdictions. Details of these approaches will be presented.
Conclusion/ImplicationsThis initiative will improve coordinated access to distributed data from across Canada that is built once then used by many stakeholders for a variety of purposes including: research, benchmarking, performance monitoring to identify gaps and opportunities for improvement, multi-jurisdictional evaluations of novel interventions and inter-jurisdictional comparisons.

IntroductionImproving the care and management of patients with diabetes, particularly those with extreme blood glucose and/or cholesterol levels, has been identified as a key priority area for healthcare in Ontario. A multi-organizational collaboration produces audit-and-feedback reports distributed to consenting primary care physicians across the province for quality improvement purposes.
Objectives and ApproachWe examined the feasibility of linking the Ontario Laboratory Information System (OLIS), a large and nearly population-wide database of laboratory test results in Ontario, with the existing provincial audit-and-feedback reporting structure to integrate aggregated, physician-level measures of glycemic and cholesterol control among patients with diabetes.
All Ontario residents alive on March 31, 2014, attached to a primary care physician, and diagnosed with diabetes for at least two years were included. These patients were linked to OLIS to extract laboratory test orders and results for glycated hemoglobin (HbA1C) and low-density lipoproteins (LDL) between April 1, 2013 and March 31, 2014.
ResultsThere were 1,108,530 diabetes patients included who were assigned to 10,085 primary care physicians. During fiscal year (FY) 2013, 70%, 64%, and 59% of diabetes patients were tested for HbA1C, LDL, and both measures, respectively. Among the 648,238 diabetes patients with at least one of each test in FY2013, 13% had a HbA1C test exceeding a threshold of 9%, 4% had a LDL test exceeding a threshold of 4 mmol/L, and 0.8% exceeded both thresholds. At the physician-level, the median (Interquartile Range) proportions of diabetes patients exceeding the testing thresholds were 12% (9%-16%) for HbA1c and 4% (2%-6%) for LDL. In a multilevel logistic regression model, there was significant between-physician variability in the proportions of diabetes patients exceeding the HbA1C (p
Conclusion/ImplicationsWe developed a mechanism for integrating population-wide, clinical laboratory test results into physician audit-and-feedback reports to improve diabetes care in Ontario. Significant variation observed in the aggregated, physician-level proportions of diabetes patients testing above clinical thresholds for HbA1C and LDL highlights the importance of reporting such information to physicians.

Administrative health data is recognized for its value for conducting population-based research that has contributed to numerous improvements in health. In Canada, each province and territory is responsible for administering its own publicly funded health care program, which has resulted in multiple sets of administrative health data. Challenges to using these data within each of these jurisdictions have been identified, which are further amplified when the research involves more than one jurisdiction. The benefits to conducting multi-jurisdictional studies has been recognized by the Canadian Institutes of Health Research (CIHR), which issued a call in 2017 for proposals that address the challenges. The grant led to the creation of Health Data Research Network Canada (HDRN), with a vision is to establish a distributed network that facilitates and accelerates multi-jurisdictional research in Canada. HDRN received funding for seven years that will be used to support the objectives and activities of an initiative called the Strategy for Patient-Oriented Research Canadian Data Platform (SPOR-CDP). In this paper, we describe the challenges that researchers face while using, or considering using, administrative health data to conduct multi-jurisdictional research and the various ways that the SPOR-CDP will attempt to address them. Our objective is to assist other groups facing similar challenges associated with undertaking multi-jurisdictional research.

The term "social licence" has been used to describe which uses and users of health data the public supports - and under what conditions. From November 2022 to January 2023, Health Data Research Network Canada was funded by the Public Health Agency of Canada to explore whether there was consensus among experienced public and patient advisors on: (i) uses of health data that all members supported or opposed and (ii) what constitutes an essential requirement for a health data use or user to be within social licence.
The project was conducted in English and French in collaboration with the Interdisciplinary Research Group in Health Informatics (GRIIS) at the University of Sherbrooke. It involved 20 public/patient advisor "participants" and an additional 13 public/patient advisors who served as peer-reviewers, all of whom had prior experience working in a health-related field and/or with health data. The process followed inclusive design principles in that it captured views held by the majority and minority of participants, including views expressed by only one or two participants.
After two 2-hour facilitated sessions, participants agreed that it is within social licence for health data to be used (i) by healthcare practitioners to improve patient care, (ii) by governments and administrators to improve the health system, and (iii) by university-based researchers to understand disease and well-being. There was consensus opposition to (i) an individual or organisation selling someone else's identified health data and (ii) health data being used for a purpose that has no public or societal benefit. There was no consensus about what constitutes an essential requirement for a use or users of health data to be with social licence. The results of the process have been published in a non-peer-reviewed report co-authored with participants.
This paper has been co-authored with a subset of the participants and peer-reviewers to present a high-level summary of the findings, methodological details, and templates to enable other groups to adapt the process to their own settings. It also presents the results of an anonymous evaluation of the process using the Public and Patient Engagement Evaluation Tool (PPEET), which were mostly positive and identified some areas for improvement.

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 a gap in terms of practical guidance about 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. Preliminary findings were presented during the meeting then refined as participants and co-authors identified relevant literature and contributed to this manuscript.

Results: Twelve (12) 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 which ensures the data trust advances its stated purpose and is transparent, (ii) comprehensive data management including responsible parties and clear processes 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.
Conclusion / Implications: Based on a review of the literature and advice from participants from 15 Canadian organizations/initiatives, practical guidance in the form of twelve min specs for data trusts were agreed on. Public engagement and continued exchange of insights and experience is recommended on this evolving topic.

IntroductionAround 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 AimsWe 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.
ResultsAnalyses 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.
ConclusionsThe 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.