Suchergebnisse

ABSTRACT
ObjectiveCanada's large single payer health systems have created provincial centres with rich, population-wide health and social data holdings that are linkable at the person level. Complementary federal data include a subset of standardized and enriched administrative healthcare data at the Canadian Institute for Health Information, Statistics Canada's extensive array of survey- and census-based social and geography-based information, and large national datasets that are being created through pan-Canadian initiatives. Unfortunately, these data assets are rarely combined in multi-province or pan-Canadian studies, often because data are not directly comparable from one province to another, or cannot be shared due to legislative or other barriers. There is now growing interest in enabling multi-province studies — even when data are not directly comparable — and in sharing experiences to make more effective use of linked or linkable administrative data across Canada.
ApproachNine provincial and national organizations have created a detailed Implementation Plan for the new PRHDN distributed data network. Without requiring that record-level data leave provincial boundaries, the PRHDN will create shared core research data infrastructure: (i) validated algorithms that implement case definitions applicable across provinces, (ii) harmonized common data and (iii) common analytic protocols. The PRHDN will also establish complementary infrastructure including dedicated personnel to assist researchers and decision makers, joined-up training and capacity building sessions, opportunities to share learning and experience related to linking new datasets such as electronic medical records and omic datasets, and forums for knowledge translation and exchange with decision makers.
ResultsThe PRHDN is already bringing together expertise from across Canada as researchers, decision makers and data custodians begin to identify opportunities for enhanced use of health data in Canadian research, policy making and practice. A simple PRHDN website has been created (https://www.prhdn.ca/) and more than 200 researchers and policy/decision makers have become members of the PRHDN consortium. Surveys of consortium members are identifying priorities for the first algorithm validation work (to-date the top four priorities are mental health, cardiovascular disease, diabetes and respiratory disease) and the PRHDN Leads Team is functioning as a decision-making body, e.g., in discussions with Statistics Canada.
ConclusionsWorking together, provincial and national organizations across Canada have identified concrete steps that can be taken to enable multi-province and pan-Canadian studies based on administrative data within one year of the start of funding. The PRHDN Leads Team is currently discussing the PRHDN vision and Implementation Plan with potential funders.

ABSTRACTObjectivesPrior to the launch of ICES Data & Analytic Services (DAS) in March 2014, only ICES scientists and analysts could access ICES data, and data could only be accessed at physical ICES locations. The DAS infrastructure, which allows public sector researchers to work with coded record level data remotely through a secure virtual environment, together with broader trends including high profile reports that call for increased access to data and the Ontario government's Open Data initiative, prompted ICES to launch a pilot project to explore potential DAS work with the private sector.
ApproachThree mandatory principles were established for all work with the private sector: (i) alignment with ICES' mission, vision and values; (ii) transparency; (iii) private sector work must not detract from ICES' research institute work. The pilot included: a jurisdictional scan; informal conversations with private sector organizations to determine potential services/studies of interest; extensive discussions with data partners; the selection and conduct of two pilot studies; focus groups with members of the general public and scientists; external advice on business model options; and an external evaluation of the pilot. No changes to data sharing agreements or ICES processes were required as work with the private sector and public sector are equally allowed under Ontario law.
ResultsThe two pilot studies were successfully completed. The first study "The disease burden of gout in Ontario: A real world data retrospective study" was performed by researchers at IMS Brogan (a healthcare analytic services provider) who were provided with access to coded record-level data using the DAS iDAVE environment and performed their own analyses. In the second pilot study, "The impact of adherence to biologics on healthcare resource utilization in rheumatoid arthritis", Janssen researchers established the research question and study design, and DAS staff and scientists provided advice about data holdings, performed the analyses, and provided Janssen and three government-funded decision making bodies with results tables. Research Ethics Board approval was required for both studies, and both private sector organizations are in the process of publishing findings.
ConclusionsICES was able to work with private sector organizations without compromising the three principles. Based on the evaluation of the private sector pilot, and the findings from the focus groups, ICES will begin offering limited analytic services to private sector researchers beginning June 2016 under ICES' existing corporate structure, and bring recommendations regarding ongoing operations to the ICES Board in June 2017.

ABSTRACTObjectivesThere is a growing need to broaden access to administrative health data in order to support decision making and planning by health system stakeholders. An initiative funded by the Ontario Ministry of Health and Long-Term Care, the Applied Health Research Question (AHRQ) portfolio leverages the linked administrative health data holdings and the scientific and clinical expertise at ICES to answer questions generated by stakeholders that will have a direct impact on health care policy, planning or practice.
ApproachEligible requesters include government ministries, health care providers and planners. Requests detail the purpose of the research question, the related scientific literature, and the planned use and intended impact of the research findings. An internal review team meets monthly to adjudicate; requests demonstrably needing research findings rapidly are adjudicated on an ad hoc basis. Eligible requests are those that aim to inform evidence-based decision making, do not advocate for a particular answer and are feasible in terms of data availability. All projects are reviewed by the internal privacy office to ensure that use of the administrative health data is in accordance with both data sharing agreements and legislation governing use of personal health information. At no cost to the requesting organization, ICES scientists and research staff formulate the analysis plan, conduct the analysis and prepare the research product (data tables, a slide deck and/or a written report); and, may opt to publish noteworthy findings. All research products must be cleared for risk of re-identification prior to being shared externally.
ResultsRequests have steadily increased from 43 submissions in fiscal year 2012/13, to 59 in 2014/15 and 74 to date in 2015/16. In fiscal year 2014/15, provincial government and government agencies were the most frequent requesters (39%), followed by hospitals and other health care providers (19%), disease advocacy groups (12%) and professional associations (10%). Requests include assessment of health care utilization; health system performance and evaluation; and chronic disease prevalence and treatment. Time to complete reports varies from 5 days to 24 months, depending on project complexity and requirements. Requesters report that AHRQ research findings have influenced decision-making, policy development and health care practice; and have inspired future research.
ConclusionThis initiative demonstrates the value and feasibility of using the linked administrative health data to answer questions to meet the unique needs of health planners and policymakers, and presents an opportunity for collaboration beyond the academic research community.

ObjectiveTo test and refine a list of 12 minimum specification essential requirements (min specs) for data trusts, data repositories, and other data collaborations that had been generated and published by a team of 19 Canadians in 2020.
ApproachWe convened an international team of more than 50 people to discuss, test, and refine the 12 min specs. Twenty-three (23) organizations tested the min specs and five analysis sub-teams were formed to identify commonalities and differences in terms of how the min specs are being fulfilled, and ways to improve the min specs. In parallel, we worked with Canada's CIO Strategy Council to develop the voluntary standard "CAN/CIOSC 100-7 Operating Model for Responsible Data Stewardship" based on the updated min specs.
ResultsThe list of min specs increased from 12 to 15: one for Legal, five for Governance, four for Management, two for Data Users, and three for Stakeholder & Public Engagement. The main changes were the division of requirements that had initially been grouped together under Stakeholder & Public Engagement, one new Governance min spec focused on Indigenous data sovereignty, one new Management min spec focused on data documentation, and multiple changes to make the min specs more precise and directive. The CAN/CIOSC 100-7 standard is progressing through committees and approvals and on track to be finalized by summer 2022. To our knowledge, it will be the first standard that identifies public engagement as a requirement for data trusts, data repositories, or other data collaboratives.
ConclusionsIncluding international team members in the testing and refinement of the min specs led to significant improvements. The process we used may also benefit other teams and organizations who are working to progress from frameworks and principles to practical guidance.

BackgroundIn December 2017 the Canadian Institutes of Health Research (CIHR) issued a request for proposals to develop a pan-Canadian health data platform. This platform will enable cross-jurisdictional research by facilitating the use of rich provincial and national data and ensure engagement with patients and specific populations including Indigenous partners. Academics and policy makers from across Canada operating under the banner of the Pan-Canadian Real-World Health Data Network (PRHDN) have joined forces to address this call.
ObjectivesCreate national infrastructure that is built once then made available for research, benchmarking, performance monitoring, multi-jurisdictional evaluations and inter-jurisdictional comparisons to address pressing health and social policy problems in Canada.
MethodsOur approach will address several issues including creating significant efficiencies in data access, streamlining cross provincial/ territorial ethics and access approvals, establishing standards for data and methods harmonization and providing innovative and privacy-conscious solutions to data access and use. The presentation will focus on the plan to create harmonized common data, algorithms and analytic protocols, and link administrative data to electronic medical records and clinical trials to create an integrated and documented infrastructure for pan-Canadian studies. Comparisons to PopMedNet and the Sentinel Initiative in the US will be made.
ConclusionProvincial centres across Canada hold rich sources of health and social data that are linkable at the person-level. With the exception of standardized data managed by the Canadian Institute for Health Information (CIHI), these data are often not comparable from one province to another, thereby limiting use to single-province studies. There is growing interest in Canada in creating an environment that would enable cross-jurisdictional data sharing and analysis' and in sharing experiences to make effective use of linkable administrative data.

Background and rationale There 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).
Main Aim Describe lessons learned in creating the Health Artificial Data and Analysis Platform (HAIDAP) in Ontario, Canada.
Methods/Approach A 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). We describe lessons learned (and being learned) following the HAIDAP's launch.
Results The HAIDAP was launched in 2019. Major 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) the hardware is the (relatively) easy part compared to other success factors.
Conclusion The 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.

This consensus statement reflects the deliberations of an international group of stakeholders with a range of expertise in public involvement and engagement (PI&E) relating to data-intensive health research. It sets out eight key principles to establish a secure role for PI&E in and with the research community internationally and ensure best practice in its execution. Our aim is to promote culture change and societal benefits through ensuring a socially responsible trajectory for innovations in this field.
Our key premise is that the public should not be characterised as a problem to be overcome but a key part of the solution to establish socially beneficial data-intensive health research for all.