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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.

A network of organizations works together to support multi-regional health research across Canada. The network comprises 13+ provincial/territorial and pan-Canadian data centres, which collectively hold 500+ data assets. Although the network actively pursues new administrative or clinical data assets, linking to external research data is also a growing need in the contemporary research landscape. Data from the network’s centres can be linked to external data sources such as that from: researchers’ trials or studies; disease or population-based registries; and data sources from other organizations or custodians. Consultations held with data centers clarified their processes for linking to external data, by identifying and mapping local linkage features to a general linkage model. Local processes for data linkage, including necessary agreements and approval steps are now modelled and documented, and available to researchers and the data centres as a resource. This information helps streamline data access and linkages to data assets across the network and externally. Operationally, the network is currently working on 11 data access requests involving linkage to external data, of which three are expected to deliver final data to researchers by spring 2024. Collaboration with data centres, affiliated organizations, and researchers are foundational in the development of linkage models across the network. These models play a critical role in making linkages across data sources within Canada more efficient and standardized. Data linkages across data assets support the utility of data and health innovation.

A network of organizations works together to facilitate multi-regional research across Canada. This network is streamlining the traditionally burdensome data access process, a major part of which is a project’s data assembly plan (DAP). A framework is proposed for the development of a DAP usable by researchers and multiple data centres across Canada. The network of 13 provincial/territorial and pan-Canadian data centres collaborated to understand variations in data request processes and local requirements. During this collaboration, partners used an iterative approach to review local forms, processes, and undertake consultations with the research community, and to identify critical components of the DAP. In April 2022, the network launched the centrally provisioned, standardized DAP form, which to date has been deployed by approximately five projects. Users have found the DAP’s unique aggregation and documentation capabilities particularly helpful. Overall, the preliminary feedback from researchers has been positive. The DAP has allowed aggregation of specific details about a project’s data requirements: cohort definition(s), data extraction(s) and analytical plans, in a single unified form. The DAP is an important component in streamlining the process for requesting data from multiple provinces/territories, organizations, and data sources. The DAP has ensured consistency across the network’s data centres that are providing data, supporting data linkage, and helping safeguard the quality of analytical results. Further process improvements are anticipated to address user experience feedback and to promote quality research.

A network of organizations collaborates to provide services to facilitate multi-regional research across Canada. To streamline the data access process, the network is developing a dictionary of information items (InfoItems), providing a label and definition that represent a semantic sourced from an ontology (e.g., “human birth date” from a demography ontology). This allows for a standardized and shareable means to express data requirements. Inspired by health-research common data models (CDMs) like those from the Observational Medical Outcomes Partnership (OMOP) and the Canadian Network for Observational Drug Effects (CNODES), approximately 60 InfoItems were developed by the network. As a pilot exercise, four data centres mapped their data assets to the InfoItems to ensure they are relevant to the Canadian health data context. This has laid the foundation for InfoItems as a basic data harmonization mechanism. The new InfoItems-based data dictionary promotes the standardization of data asset contents across the network’s data centres. Researchers can use the dictionary to specify a project’s data requirements, establishing details like data availability across multiple regions, for inclusion in their data access request. The InfoItems dictionary is pivotal in simplifying data access requests, promoting multi-regional research in Canada. This resource can simultaneously safeguard the quality of analytical results and optimize data extraction into existing data models (e.g., health-research CDMs). Ongoing improvements in this area aim to enhance user experience and facilitate quality research.

AbstractObjectives This study aimed to assess the impact of on-demand versus continuous prescribing of proton pump inhibitors (PPIs) on symptom burden and health-related quality of life in patients with gastroesophageal reflux disease (GERD) presenting to primary care.Methods Thirty-six primary care centres across Europe enrolled adult GERD patients from electronic health records. Participants were randomised to on-demand or continuous PPI prescriptions and were followed for 8 weeks. PPI intake, symptom burden, and quality of life were compared between the two groups using mixed-effect regression analyses. Spearman’s correlation was used to assess the association between changes in PPI dose and patient-reported outcomes.Results A total of 488 patients (median age 51 years, 58% women) completed the initial visit, with 360 attending the follow-up visit. There was no significant difference in PPI use between the continuous and on-demand prescription groups (b=.57, 95%CI:0.40-1.53), although PPI use increased in both groups (b = 1.33, 95%CI:0.65 − 2.01). Advice on prescribing strategy did not significantly affect patient-reported outcomes. Both symptom burden (Reflux Disease Questionnaire, b=-0.61, 95%CI:-0.73 − -0.49) and quality of life (12-item Short Form Survey physical score b = 3.31, 95%CI:2.17 − 4.45) improved from baseline to follow-up in both groups. Increased PPI intake correlated with reduced reflux symptoms (n = 347, ρ=-0.12, p = 0.02) and improved quality of life (n = 217, ρ = 0.16, p = 0.02).Conclusion In real-world settings, both continuous and on-demand PPI prescriptions resulted in similar increases in PPI consumption with no difference in treatment effects. Achieving an adequate PPI dose to alleviate reflux symptom burden improves quality of life in GERD patients. EudraCT number 2014-001314-25.

La notion de transparence ressort régulièrement des discussions autour des utilisations secondaires des données de santé. Peu d’études se penchent toutefois sur les impacts de la présence ou de l’absence de transparence ou de son absence sur les membres du public. Cette revue de littérature répond à cette lacune. Elle résulte d’une analyse secondaire de 124 textes issus d’une recension de la portée sur la transparence conformément aux lignes directrices PRISMAS-ScR. Les résultats contribuent à identifier les impacts négatifs ou positifs et à les associer à certaines composantes communicationnelles relatives aux utilisations secondaires de données de santé. Ils permettent également d’identifier les composantes associées à une communication jugée transparente ou opaque par les parties prenantes. La transparence, et plus particulièrement la continuité de la communication, est fortement associée à une augmentation de la confiance et de l’acceptabilité sociale alors qu’en général, les membres du public perçoivent négativement un manque de transparence. Cette revue de littérature approfondit également les connaissances sur les risques d’impacts négatifs de la communication transparente.

Objectives Chronic pain (CP) is a poorly recognised and frequently inadequately treated condition affecting one in five adults. Reflecting on sociodemographic disparities as barriers to CP care in Canada was recently established as a federal priority. The objective of this study was to assess sex and gender differences in healthcare utilisation trajectories among workers living with CP.Design Retrospective cohort study.Participants This study was conducted using the TorSaDE Cohort which links the 2007–2016 Canadian Community Health Surveys and Quebec administrative databases (longitudinal claims). Among 2955 workers living with CP, the annual number of healthcare contacts was computed during the 3 years after survey completion.Outcome Group-based trajectory modelling was used to identify subgroups of individuals with similar patterns of healthcare utilisation over time (healthcare utilisation trajectories).Results Across the study population, three distinct 3-year healthcare utilisation trajectories were found: (1) low healthcare users (59.9%), (2) moderate healthcare users (33.6%) and (3) heavy healthcare users (6.4%). Sex and gender differences were found in the number of distinct trajectories and the stability of the number of healthcare contacts over time. Multivariable analysis revealed that independent of other sociodemographic characteristics and severity of health condition, sex—but not gender—was associated with the heavy healthcare utilisation longitudinal trajectory (with females showing a greater likelihood; OR 2.6, 95% CI 1.6 to 4.1).Conclusions Our results underline the importance of assessing sex-based disparities in help-seeking behaviours, access to healthcare and resource utilisation among persons living with CP.

BackgroundSecondary use of health data has reached unequaled potential to improve health systems governance, knowledge, and clinical care. Transparency regarding this secondary use is frequently cited as necessary to address deficits in trust and conditional support and to increase patient awareness. ObjectiveWe aimed to review the current published literature to identify different stakeholders’ perspectives and recommendations on what information patients and members of the public want to learn about the secondary use of health data for research purposes and how and in which situations. MethodsUsing PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) guidelines, we conducted a scoping review using Medline, CINAHL, PsycINFO, Scopus, Cochrane Library, and PubMed databases to locate a broad range of studies published in English or French until November 2022. We included articles reporting a stakeholder’s perspective or recommendations of what information patients and members of the public want to learn about the secondary use of health data for research purposes and how or in which situations. Data were collected and analyzed with an iterative thematic approach using NVivo. ResultsOverall, 178 articles were included in this scoping review. The type of information can be divided into generic and specific content. Generic content includes information on governance and regulatory frameworks, technical aspects, and scientific aims. Specific content includes updates on the use of one’s data, return of results from individual tests, information on global results, information on data sharing, and how to access one’s data. Recommendations on how to communicate the information focused on frequency, use of various supports, formats, and wording. Methods for communication generally favored broad approaches such as nationwide publicity campaigns, mainstream and social media for generic content, and mixed approaches for specific content including websites, patient portals, and face-to-face encounters. Content should be tailored to the individual as much as possible with regard to length, avoidance of technical terms, cultural competence, and level of detail. Finally, the review outlined 4 major situations where communication was deemed necessary: before a new use of data, when new test results became available, when global research results were released, and in the advent of a breach in confidentiality. ConclusionsThis review highlights how different types of information and approaches to communication efforts may serve as the basis for achieving greater transparency. Governing bodies could use the results: to elaborate or evaluate strategies to educate on the potential benefits; to provide some knowledge and control over data use as a form of reciprocity; and as a condition to engage citizens and build and maintain trust. Future work is needed to assess which strategies achieve the greatest outreach while striking a balance between meeting information needs and use of resources.

Abstract Background The advent of learning healthcare systems (LHSs) raises an important implementation challenge concerning how to request and manage consent to support secondary use of data in learning cycles, particularly research activities. Current consent models in Quebec were not established with the context of LHSs in mind and do not support the agility and transparency required to obtain consent from all involved, especially the citizens. Therefore, a new approach to consent is needed. Previous work identified the meta-consent model as a promising alternative to fulfill the requirements of LHSs, particularly large-scale deployments. We elicited the public’s attitude toward the meta-consent model to evaluate if the model could be understood by the citizens and would be deemed acceptable to prepare for its possible implementation in Quebec. Methods Eight focus groups, with a total of 63 members of the general public from various backgrounds were conducted in Quebec, Canada, in 2019. Explicit attention was given to literacy levels, language spoken at home and rural vs urban settings. We assessed attitudes, concerns and facilitators regarding key components of the meta-consent model: predefined categories to personalized consent requests, a dynamic web-based infrastructure to record meta-consent, and default settings. To analyse the discussions, a thematic content analysis was performed using a qualitative software. Results Our findings showed that participants were supportive of this new approach of consent as it promotes transparency and offers autonomy for the management of their health data. Key facilitators were identified to be considered in the implementation of a meta-consent model in the Quebec LHSs: information and transparency, awareness campaigns, development of educational tools, collaboration of front-line healthcare professionals, default settings deemed acceptable by the society as well as close partnerships with recognized and trusted institutions. Conclusions This qualitative study reveals the openness of a sample of the Quebec population regarding the meta-consent model for secondary use of health data for research. This first exploratory study conducted with the public is an important step in guiding decision-makers in the next phases of implementing the various strategies to support access and use of health data in Quebec.

Objective Assess adherence to the Diabetes Clinical Practice Guidelines (CPG) for the Prevention and Treatment of Cardiovascular Disease (CVD) in Family Medicine Groups (FMG) in Quebec.Methodology A retrospective cohort was used with patients with diabetes (PWD) and/or CVD, enrolled in a FMG and the Public Prescription Drug Plan (PPDP) between 2017 and 2020.Results Six adjusted indicators (gender and age) for the management of CVD in PWD aged 50 and over and enrolled in a FMG and the PPDP were calculated. In 2019-2020, among PWD with CVD, 82.0% were taking a statin, 71.9% were taking an antiplatelet, 66.5% were taking an angiotensin receptor (ARB) blocker or angiotensin-converting enzyme (ACE) inhibitor, and 25.5% were taking cardiac-protection therapies [ sodium/glucose cotransporter 2 (SGLT-2), Glucagon like peptide antagonist (GLP-1)]. Among PWD for 15 years, 50.4% take a statin, while in the absence of CVD, 36.1% take an antiplatelet.Conclusion The prescriptions for statin, antiplatelet and ACE/ARB appear in accordance with the CPG and stable from 2017 to 2020. Prescription of antiplatelet in primary prevention was declining between and SGLT-2/GLP-1 were increasing from 2017 to 2020, which is consistent with the recommendations from Diabetes Canada CPG.[1]

Abstract Introduction A major consideration for the implementation of a learning health system (LHS) is consent from participants to the use of their data for research purposes. The main objective of this paper was to identify in the literature which types of consent have been proposed for participation in research observational activities in a LHS. We were particularly interested in understanding which approaches were seen as most feasible and acceptable and in which context, in order to inform the development of a Quebec‐based LHS. Methods Using a scoping review methodology, we searched scientific and legal databases as well as the gray literature using specific terms. Full‐text articles were reviewed independently by two authors on the basis of the following concepts: (a) LHS and (b) approach to consent. The selected papers were imported in NVivo software for analysis in the light of a conceptual framework that distinguishes various, largely independent dimensions of consent. Results A total of 93 publications were analysed for this review. Several studies reach opposing conclusions concerning the best approach to consent within a LHS. However, in the light of the conceptual framework we developed, we found that many of these results are distorted by the conflation between various characteristics of consent. Thus, when these characteristics are distinguished, the results mainly suggest the prime importance of the communication process, by contrast to the scope of consent or the kind of action required by participants (opt‐in/opt‐out). We identified two models of consent that were especially relevant for our purpose: metaconsent and dynamic consent. Conclusions Our review shows the importance of distinguishing carefully the various features of the consent process. It also suggests that the metaconsent model is a valuable model within a LHS, as it addresses many of the issues raised with regards to feasibility and acceptability. We propose to complement this model by adding the modalities of the information process to the dimensions relevant in the metaconsent process.

Given the ever-growing body of knowledge, healthcare improvement hinges more than ever on efficient knowledge transfer to clinicians and patients. Promoted initially by the Institute of Medicine, the Learning Health System (LHS) framework emerged in the early 2000s. It places focus on learning cycles where care delivery is tightly coupled with research activities, which in turn is closely tied to knowledge transfer, ultimately injecting solid improvements into medical practice. Sensitive health data access across multiple organisations is therefore paramount to support LHSs. While the LHS vision is well established, security requirements to support them are not. Health data exchange approaches have been implemented (e.g., HL7 FHIR) or proposed (e.g., blockchain-based methods), but none cover the entire LHS requirement spectrum. To address this, the Sensitive Data Access Model (SDAM) is proposed. Using a representation of agents and processes of data access systems, specific security requirements are presented and the SDAM layer architecture is described, with an emphasis on its mix-network dynamic topology approach. A clinical application benefiting from the model is subsequently presented and an analysis evaluates the security properties and vulnerability mitigation strategies offered by a protocol suite following SDAM and in parallel, by FHIR.