Suchergebnisse

ObjectiveIn March 2014, ICES launched Data & Analytic Services (DAS), expanding the access to ICES data and analytics beyond ICES scientists and analytic staff. In eight years, DAS has grown and evolved to increase high quality services offered to an expanding client base of external researchers.
ApproachAt the inception of DAS, two services were offered to public sector researchers: data access and analytics. Data access enabled researchers to analyze coded record-level data through a secure virtual environment. Analytics, conducted by DAS staff in ICES analytic environment, provided researchers with risk-cleared summary level reports. In response to growing demand from an increasingly diverse range of researchers, ICES engaged in extensive consultations with internal and external stakeholders to re-evaluate and operationalize new services. Compliance with contractual obligations and Ontario law, organizational capacity to scale up, alignment with ICES' mission, vision and values, were cornerstones in establishing new offerings.
ResultsAnalytic services became available to private sector researchers in June 2016. In March 2017, support for cohort and longitudinal follow-up studies became the newest service offering (researchers provided with a list of applicable individuals defined for the purposes of conducting publicly funded research). As more data assets become available to researchers, requests continue to increase in volume and complexity, particularly of projects seeking to import external data for linkage to ICES data. A second high performance computing virtual environment onboarded researchers September 2021 while the original analytic environment has undergone multiple upgrades, and will soon be fully refreshed. Regular solicitation of feedback has enabled DAS to increase staffing and diversify resources available which improves the client experience at all stages.
ConclusionsSince its inception, DAS has expanded from five to thirty personnel, grown and diversified its new and returning client base and has responded to demand for new services. DAS continues to provide high quality services which enable impactful research and is responsive to new opportunities for collaboration and service provision.

ObjectivesPatient Support Programs (PSPs) provide real-world evidence on short-term outcomes and drug adherence for specialty care. These data are collected directly from patients by pharmaceutical companies. Data linkage is facilitated by a publicly-funded health research institute which houses population-based, individual-level health administrative data for 14 million Ontario residents in Canada since 1992. Linkage provides a more comprehensive and transparent view of patients' pathways and care.
ApproachIndustry-funded research conducted through the data & analytic service must align with the institute's mission, vision and values, and demonstrate a clear public benefit. For transparency, and to support broader public benefit and research access, final deliverables and analytic plans are posted on the institute's website. Privacy impact assessments are conducted to ensure ethics approvals, consent and data sharing agreements are established, prior to data importation. To safeguard privacy, designated data covenantors encrypt and link the PSP data with in-house data holdings. Analyses are performed by senior analytic staff, providing researchers with summary-level reports.
ResultsSince 2016, the institute has worked with organizations to link data for research, including PSP data on thousands of patients, enabling crucial insight into treatment patterns, drug adherence, costs and long-term outcomes.
ConclusionLinkage of privately-owned PSP data with administrative health data at the institute, provides opportunities to identify gaps in care and improve quality of research. Data challenges around bias, transparency, completeness, and comprehensiveness are minimized.
ImplicationsResults provide decision-makers and healthcare professionals with a trusted and comprehensive understanding of patient care pathways to improve health outcomes.

ICES was founded in 1992 to study the health care system and promote effective, efficient and equitable health care. Over 27 years later, the goal remains largely unchanged, though the institute has grown in size and impact. Created as an independent not-for-profit research institute and given what was, at the time, unprecedented access to administrative health data records for the population of Ontario, ICES' initial focus was to better understand the delivery of hospital services and translate its findings into better health care and policy. From modest beginnings with a handful of researchers located in a few hospital offices, ICES has grown to encompass a community of almost 500 scientists and staff across a network of seven physical sites in Ontario. The original focus on hospital-based services has expanded significantly and now includes research and analysis of community-based health services, health policy, Indigenous health, social determinants of health, and data science.

Objective and ApproachWe analyzed barriers and enablers to accessing pan-Canadian health sector data and data analytic services for three distinct user groups: 1) academic researchers, 2) health-system knowledge users (KUs), and 3) private sector researchers. Specifically, we a) conducted a legislative and policy scan regarding use of health administrative data for research, quality improvement, and health system management and b) systematically consulted with data centre directors and staff, privacy and legal experts, knowledge users (KUs), private sector entities, and university and government officials.
ResultsKUs and private sector organizations face unique barriers because structures and regulations related to data access and use are set at multiple university and government institutions and are primarily designed for academic research. Additionally, data repositories often have specific policy/legislative barriers to working with KUs and/or private sector researchers. However, all groups face common issues including variations in regional regulations and policies making harmonized and streamlined processes challenging; lengthy data access and ethics review processes; and regional variations in data availability. Enablers included diverse expertise and initiatives across Canada such as: initiatives to streamline ethics reviews for multi-regional research, expand data holdings, increase standardization and harmonization, and implement systems for federated analyses.
ConclusionsAccess to health system data and analytics in Canada varies by user group and across regions. Although each user group faces unique challenges, they also all have many barriers and enablers in common.
ImplicationsImproving health system data access for one use group has the potential to benefit the others.

ICES upholds a strong reputation for generating high-quality evidence to inform policy and practice through its collaborations with a broad range of health system stakeholders including government policymakers and healthcare providers including clinicians. Supported by the Ontario Ministry of Health and Ministry of Long-Term Care, the ICES Applied Health Research Question (AHRQ) Program leverages the data holdings and, scientific and clinical expertise to generate evidence tailored to the information needs of requestors. This paper outlines the approach, process, strengths, challenges and the resulting influence and impact to the healthcare landscape in Ontario.

ObjectiveTo provide an update on the key characteristics, refinements to project flow, and future opportunities for a program providing customized research evidence to health system policymakers and providers.
ApproachWith a goal to inform health system decision making, the program answers research questions posed by health system requestors that can be answered with linked, population-based administrative data. Now in its 10th year of operation, the program has been refined over time to improve efficiency, usefulness of research products, and requestor satisfaction. Satisfaction surveys and individual-level engagements with requestors are used to collect feedback on the needs of an increasingly diverse group of requests.
ResultsWith 508 requests, 82 Data Sharing Agreements, and 257 unique requestors since its inception, the program informs governmental decision making, evaluates intervention effectiveness, and aids grassroots organizations' planning for services. Notable updates to the program include, inserting multiple opportunities for connection between the program and requestors through the project life cycle to understand goals and needs; assigning staff scientists to shepherd projects and promote efficiency; training coordinators to review privacy impact assessments; and (soon) accepting a broader range of projects to include data beyond the health sector e.g. education.
ConclusionThis program continues to improve and is an exemplar of sustainable approaches to supporting health system requestors with evidence from administrative data in program evaluation, planning and policy change.
ImplicationsBeing responsive to requestor needs has allowed the program to attract an increasingly diverse range of requesters who can obtain impactful and timely research evidence.

IntroductionThe Ontario Brain Institute (OBI) is a provincially funded, not-for-profit organization that accelerates discovery and innovation, benefiting both patients and the economy (Stuss, 2014). OBI has established a large-scale neuroinformatics platform - Brain-CODE - to support the collection, storage, federation, sharing, and analysis of different data types across several brain disorders (Behan et al., 2023; Vaccarino et al., 2018). A privacy preserving record linkage protocol was developed to allow for the linkage of research data at Brain-CODE with health administrative data holdings at the Institute for Clinical Evaluative Sciences (ICES) (Gee et al., 2018).
Objective and ApproachThe methodology related to an ongoing crosswalk linkage between OBI and ICES, to allow for more seamless integration between the respective data holdings, has been previously presented (Behan et al., 2020). This methodology has since been operationalized leading to the establishment of an ongoing crosswalk linkage that is updated on an annual basis.
ResultsSince the initial development of this ongoing crosswalk, two updates have been successfully completed leading to the linkage of over 7,000 study participants between the two platforms. This has led to a more efficient utilization of human and computational resources, compared to earlier data linkage projects completed on a project-by-project basis. Analysis projects in the areas of neurodegeneration, concussion, and neurodevelopmental disorders have already leveraged this crosswalk linkage process.
Conclusions/ImplicationsThe establishment of this ongoing crosswalk linkage has supported a more streamlined approach of data linkage activities between OBI and ICES allowing for enhanced neuroscience-focused research activities.

ObjectiveThe James and Hudson Bay Region, consisting of six remote Indigenous communities, have experienced barriers accessing regional health data. To inform local health planning, the Minomathasowin Healthy Living department in the Weeneebayko Area Health Authority (WAHA), ICES and Laurentian University developed a Collaboration, to co-create enhanced Indigenous data stewardship.
ApproachThe Collaboration combines expertise in Indigenous knowledge with quantitative and qualitative analyses to develop relevant data intended for public dissemination. Through a community-driven and strength-based approach, local knowledge guides the direction of the research. Indigenous data governance principles are applied, supporting local data ownership, and supplementing local knowledge on population health issues. This ensures the development of research projects that have meaningful impacts. The Collaboration is part of a larger partnership and is continually engaging local Indigenous stakeholders. Protocols ensure research is done in a manner that respects and reflects community well-being and is undertaken in a good way.
ResultsThe Collaboration is an ongoing, living initiative and has enabled WAHA to become a local hub for Indigenous stakeholders to obtain health data for their respective communities. It adheres to the importance of following protocols within Indigenous communities, acknowledging qualitative research activities can be undertaken at the community-level. Projects from this Collaboration identify and prioritize the most pressing health issues impacting the Region including mental health and addictions, COVID-19 surveillance, hospitalization trends, and the prevalence of lupus. The success of the Collaboration is demonstrated through increased requests from the Region to WAHA for support on health planning and decision-making. Data access barriers in the Region are being addressed through the combined expertise of the Collaboration and local knowledge. This approach is enhancing Indigenous data stewardship.
ConclusionsThe Collaboration advocates for Indigenous-led and -driven research that recognizes the value of combining local knowledge with quantitative and qualitative data analyses to put communities first. The Collaboration supports equitable data access and the development of relevant research projects. This is leading to sustainable, impactful health planning for the Region.

IntroductionHealth 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.
MethodsWe 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.
ResultsSince 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 ConclusionICES 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.