Le répertoire des processus d’accès aux données donne un aperçu des exigences et des procédures qui régissent l’accès aux données dans chaque centre de données partenaire. Il décrit le processus d’accès aux données en fonction des étapes de projet. Le GSAD entend appuyer les demandeurs de données à chacune des étapes de manière à optimiser leur démarche.
Veuillez cliquer sur les organismes de données provinciaux, territoriaux ou pancanadiens qui vous intéressent pour obtenir de l’information sur le processus d’accès aux données*.
Le répertoire des processus d’accès aux données sera traduit en français au printemps 2020.
|Étapes du projet||Colombie-Britannique||Alberta||Saskatchewan||Manitoba||Ontario||Nouveau-Brunswick||Nouvelle-Écosse||Terre-Neuve-et-Labrador||Statistique Canada||Institut canadien d'information sur la santé|
|Acronymes||DAR – Data Access Request||
SPOR – Strategy for Patient-Oriented Research
ABSPORSU – Alberta SPOR Support Unit
HREB – University of Alberta Health Research Ethics Board
CHREB – Conjoint Health Research Ethics Board
AHS – Alberta Health Services
SCPOR - Saskatchewan Centre for Patient-Oriented Research
HQC – Saskatchewan Health Quality Council
MoH – Ministry of Health
MCHP – Manitoba Centre for Health Policy
WRHA – Winnipeg Regional Health Authority
ORS – Office of Research Services (University of Manitoba)
HIPC – Health Information Privacy Committee
ICES – Institute for Clinical Evaluative Sciences
DAS – Data & Analytic Services
IDAVE – ICES Data & Analytic Virtual Environment
DSH - Data Safe Haven
REB – Research Ethics Board
IRDT – Institute for Research, Data & Training
UNB – University of New Brunswick
|HDNS – Health Data Nova Scotia||
NLCHI - Newfoundland and Labrador Centre for Health Information
HREB – Health Research Ethics Board
PHIA – Personal Health Information Act, 2011
HOOU – Head Office Operations Unit
RDC – Research Data Centre
MAP – Microdata Access Portal
|CIHI – Canadian Institute for Health Information|
|Services analytiques||PopData BC does not offer analytical services.||ABSPOR offers analytical services.||SCPOR/SK HQC offers analytical services.||MCHP offers analytical services.||ICES offers analytical services.||NB-IRDT offers analytical services.||HDNS offers analytical services.||NLCHI offers analytical services.||Statistics Canada does not offer analytical services.||CIHI does not offer analytical services.|
|Lancement du projet et admissibilité||PopData’s application process starts with an eligibility review of the project team. Project teams submit information on forms, which may be filled and submitted online through DAROnline, including project team (form), project protocol (form) and the requested service data (form).||An ABSPORSU application process is initiated when a service data request form is submitted by a project team’s submitter to the service. The submission must include the project protocol.||SCPOR’s application process starts with a review of the project by a service team consisting of SCPOR representatives. The review is conducted using a scoring tool for patient-oriented research as a guide. The score must exceed a threshold in order for an application to proceed. (but see below).||Every project proposal must be submitted to MCHP using a form which includes information covering the principal investigator (project team form), project protocol (form) and the requested service data (form). MCHP performs an eligibility review (mandate).||An ICES application process is initiated when a Data & Analytic Services (DAS) request form is submitted to the service along with supporting documentation. The service team reviews the eligibility of the project team.||NB-IRDT’s application process starts when a project team submits information on forms related to the project team (form), project protocol (form) and the requested service data (form). The NB-IRDT service team will reach out to the project team as required.||The HDNS application process requires a project team to request a feasibility review and a cost estimate through its Data Access Feasibility and Cost Estimate request form. This form must be accompanied by the project protocol and other relevant information about the project. CVs of the PI and team members accessing line level data are submitted for review with the DAR||Every project proposal must be submitted to NLCHI using a form which includes information covering the project team (form) and project protocol (form). NLCHI performs an eligibility review and advises on the timeline for the application process.||Project teams may consult with StatCan local RDC sub-team(s) in advance of initiating an application process. An RDC application process begins when a submitter creates an account via the Statistics Canada microdata access online portal. The submitter completes an online form and attaches a project protocol (research proposal) and supporting documents, on behalf of the project team.||A CIHI application process begins when a submitter fills a Data Inquiry form through the CIHI web site, on behalf of the project team. The form is reviewed, and the eligibility of the project team reviewed, including data access arrangements for the analysts.|
|Évaluation de la faisabilité et demande d’estimation des coûts||PopData will perform a feasibility review using the project protocol. PopData will provide confirmations for eligibility and feasibility and a resource & cost estimate, usually within 2 weeks.||An estimate resource and cost valuation can be requested using the service data request form and is made available following feasibility review.||A resource and cost valuation is not provided as there is no direct cost to project teams for use of SCPOR services. Through a support request form and consultation with the service team, the project team can request a feasibility review and other forms of support.||MCHP performs a feasibility review and agrees (through consultations) the precise service data request. A review of resource and costs is then made, and resource & cost estimates provided to the project team.||The service team performs a feasibility review of the project protocol. Thereafter, the service team confirms feasibility and provides an estimated resource and cost valuation.||NB-IRDT will perform a feasibility review of the project protocol and the coordination role will then provide confirmation of feasibility and a resource & cost valuation estimate.||On completion of the feasibility review the service’s coordination team will issue a feasibility confirmation and a resource and cost valuation estimate.||Following consultation with the NLCHI service team and a feasibility review to clarify the project protocol (objectives) and determine the precise service data request, a preliminary resource and cost valuation is prepared and agreed by the submitter and may be used with funding sources.||All applications must undergo a StatCan feasibility review for the service data requested. This review will determine whether the data requested are able to support the project protocol (proposal). To determine if access fees apply, applicants complete an online form at the time of application.||Thereafter a feasibility review is performed to ensure CIHI can fulfil the data needs of the project protocol. A project team may request an estimate of the resource and cost valuation at anytime following feasibility confirmation.|
|Demande officielle d’accès aux données||A service data request form (part of the DAR) can be completed with the help of the MetaDataCentral tool, which is part of DAROnline.||Our formal data request procedure is to have the researcher submit a form to our "Request Management Tool" (RMT; internal to AHS) or request a fillable pdf version (for those outside AHS). The RMT is reviewed by the triage team and research quests are sent to the research team to be completed.||There is no formal data access request process. Data request elements may be included in the eligibility and initiation process or through the feasibility review.||A requested service data form must be completed.||ICES does not have a formal data access request form.||If the project is feasible, the submitter submits a service data request form and supporting documents to the coordination role.||Following consultations, the submitter will complete a precise service data request form and submit to the coordination team. The service’s governance team will review this at its monthly meeting. Designated project team members will be invited to attend the meeting to answer any questions.||A service data request form must be completed||The StatCan microdata access portal, in consultation with local RDC sub-teams, should be used to establish the precise service data request for a project in advance of an application process.||Following feasibility confirmation, a project team will fill and submit a service data request form consistent with the project protocol.|
|Consultation||The PopData coordination team reviews all forms to ensure they are correctly filled (form review), and that all supporting approvals have been provided (ethics and scientific peer review). The data held by the PopData service are sourced from multiple original data providers such as the BC Ministry of Health, WorkSafeBC and the BC Cancer Agency. The PopData data liaison officer ensures that the data controllers for these providers have timely access to all forms and approvals and obtains an ODP approval from each of them.||A project team may consult the service team at any point during the application process.||Throughout an application process (including eligibility and feasibility review), the SCPOR service offers consultation support to project teams.||Throughout an application process (including eligibility and feasibility review), the MCHP service offers consultation support to project teams.||The project team is consulted by phone to review objectives and timelines.||The coordination role schedules a meeting with the project team, either in person or via conference call, to review the project protocol, project-cohort review and its data requirements.||Throughout an application process (including eligibility and feasibility review), the HDNS service offers consultation support to project teams.||A meeting it scheduled between the submitter and the service team.||Project teams may consult with local RDC sub-team(s) in advance of initiating an application process with StatCan.||Through one or more consultations with the project team a project plan will be prepared with reference to the service data request and the project protocol. A final resource and cost valuation will be made for inclusion in the service agreement.|
|Déontologie, examen par les pairs et financement||A service data request form must be accompanied by an ethics approval from a Canadian REB (ethics committee) and scientific peer review approval from a recognised peer review group. The applications to these bodies should also be provided. Funding information should be included in the service data request form. Funding letters, and industry contract, if applicable, should be included.||An ethics approval must be obtained from a within-province ethics committee and be one of the following: University of Alberta Health Research Ethics Board (HREB) University of Calgary Conjoint Health Research Ethics Board (CHREB) If ethics approval is not yet available, the application documents will suffice. A peer review is not required, nor is there a formal process for funding requirements.||Once support is confirmed the project team must obtain an in-province ethics approval from either the University of Saskatchewan ethics committee, or the University of Regina ethics committee. A peer review is not required, nor is there a formal process for funding requirements. SCPOR offers in-kind support to project teams.||The following approvals are required, and reviews made: in-province ethics, scientific peer review, funding. The MCHP eligibility review includes a check that funding sources chosen by the project team meet MCHP guidelines. The ethics review ensures: (1) Ethics approval was sought from UofM Office of Research Ethics & Compliance ethics committee. (2) The ethics committee application was by researchers affiliated to UofM or WRHA. The principal investigator must be a UofM employee or researcher affiliated to WRHA.||On receiving confirmation of feasibility, a project team must obtain and provide a Canadian ethics approval from an ethics committee. The service’s governance team reviews the ethics approval (including the documents submitted to the ethics committee). Peer review not required for submission. Project funding must be from a public source.||The submitter submits an application to the UNB research ethics committee, while the NB-IRDT coordination role sends a letter of support and a copy of the service data request form. The in-province ethics approval is provided to both the project team and coordination role. Peer review is not required. Funding is not its own process, but it gets discussed in the feasibility, application and institute review phases.||Based on the project protocol the project team must obtain an ethics approval from a recognised Canadian ethics committee and, if applicable, a peer review approval from a recognised peer review group. Information on funding is requested in the service data request form (funder and amount).||The following approvals are required by NLCHI governance team to confirm an application can proceed to project execution: an ethics approval from the provincial ethics committee – the Health Research Ethics Board (HREB). At present applications by private sector funding sources and/or project teams are not considered. Peer Review is not required.||Applications submitted by tenured university faculty, those with tri-council funding or from supervised students are exempt from a scientific peer review. All other academic project teams will be asked to obtain a scientific peer review from a suitable peer group (assessor) with expertise in the subject matter area. An Ethics review may be required for project teams with funding sources from the for-profit sector.||The submitter must provide an ethics approval or evidence that an ethics committee was consulted. Projects whose funding source(s) include private funding may not be eligible to access certain data held by CIHI. A peer review is not required.|
|Approbation des fournisseurs de données initiaux||After ODP approvals from all data controllers have been received by the data liaison officer an application confirmation is provided to the project team.||The ABSPORSU service does not require ODP approvals for data already held by the service. If external data is required by the project, then relevant ODP approval(s) must be obtained. This will usually be handled internally by the service.||Further approvals from original data providers (ODPs) is not required if the data requested falls under the Master Data Sharing agreement between SK HQC (who co-lead the service) and the SK Ministry of Health and eHealth SK. If additional, external data is required to be linked, then explicit approval must be obtained from the chosen ODP(s).||The data held by the MCHP service as sourced from multiple original data providers. Examples of original data providers are government and health agencies (WHRA, Diagnostic Services Manitoba, Education, Manitoba Department of Families, Justice) and other groups such as AMC and MMF. Approvals will be obtained by MCHP.||If external data is required to be linked an explicit ODP approval must also be obtained.||The coordination role schedules a meeting with original data providers and others.||HDNS acts as a data controller and does not consult original data providers unless data is to be remotely accessed for analysis outside of Nova Scotia.||ODP approval may be required in certain instances. NL will work with the requestor to facilitate any additional approvals that may be required.||StatCan acts as a data controller. A data liaison officer will review requests to access a data resource during each application process.||ODP approval may be required in certain instances. CIHI will work with the requestor to facilitate any additional approvals that may be required.|
|Examen relatif au respect de la vie privée, à la confidentialité et à la sécurité||Process to be outlined.||Once ethics approval has been obtained and a project plan developed, a PCS review will take place.||HQC performs a PCS review of the project protocol’s data requirements. Specific additional variables may require approval from the SK Ministry of Health.||HIPC makes a PCS review providing the project team with approvals. See the HIPC web site for details, which requires that project forms and other approvals, such as ethics, are submitted to HIPC.||The service’s governance team reviews the ethics approval (including the documents submitted to the ethics committee) and project undergoes PCS review.||The coordination role provides the privacy officer with the service data request form and supporting ethics approval, for a PCS review.||This review is included as part of the governance review.||Once the service data request has been finalised it is reviewed jointly by the service’s technical team, PCS team and governance team.||All project team members must obtain security clearance before they can access the requested service data in a local RDC. All statistical outputs are reviewed for confidentiality by the local RDC sub-team before they are released to the project team.||If a project requires linked data, whether within the CIHI data holdings or with external data, additional internal reviews will take place as part of a PCS review.|
|Contrats et ententes||After governance and application confirmations have been issued by the PopData service team, several agreements are made, including: Research Agreement Service agreement, including expected resource and cost valuation Information sharing agreement Non-disclosure agreement||Following governance confirmation and application confirmation a data disclosure research agreement is made between the principal investigator and the director of the AHS Health systems Access team (made within an overarching cooperation agreement between AHS and University of Alberta and University of Calgary).||A researcher agreement is then signed between the project team and the service team (SK HQC). All members of the project team must sign a confidentiality agreement. Project analysts who will work onsite at HQC must also submit to a criminal record check. If additional, external data is requested, then an Information Sharing Agreement must be signed between SK HQC and the ODP(s), namely SK MoH and eHealth SK.||MCHP performs a governance and application review to complete the appraisal process. Project teams with positive application confirmations will complete a researcher agreement for final tripartite acceptance (by the principal investigator, UoM ORS, Government of Manitoba).||The service team performs a final governance review and application review. Thereafter the service team and project team will sign a researcher agreement and a confidentiality agreement.||The coordination role facilitates a final governance and application review to complete the appraisal process by the governance team. After governance and application confirmations have been issued by the coordination team, two agreements are made: Information Sharing Agreement Service Agreement||After a final governance review to ensure all approvals and reviews are completed, the HDNS coordination team will issue an application confirmation to the project team. Project teams will then complete a researcher agreement to be signed by the Principal Investigator and confidentiality agreement, to be signed by the Principal Investigator and project analysts. Prior to project execution, the service team will prepare the Information Sharing Agreement, which will be signed by the Principal Investigator and the Chair of the service’s governance team.||Following a positive application confirmation the NLCHI service team will prepare a researcher agreement and an information sharing agreement between the NLCHI and the organization with whom the requestor is affiliated with .||All researchers on the project team must sign a Microdata access legal agreement which includes a conflict of interest statement and a network use agreement. Project team members must affirm an Oath of Office to Statistics Canada.||The submitter reviews the project plan and the resource and cost valuation, and subsequently signs a legal agreement.|
|Préparation des données||Prior to project execution, the PopData service team will perform: Cohort preparation and Data preparation and access arrangements||A technical team member will consult with the project team to confirm the project cohort and prepare data and access arrangements.||Members of the technical team (HQC analysts) create cohorts and prepare data according to the project plan and make it accessible on-site to the project team.||Process to be outlined.||
Using the project plan the technical team determines the cohort(s), prepares the data for these cohort(s) and when required makes it accessible (DPA).
Analytic support is as well available, and in this case the technical team performs the analysis as per the project plan and provides the final deliverables/ reports to the project team.
|The coordination role sends Information Sharing Agreement to the service’s technical team and the privacy officer.||Data Preparation and Access (DPA) is completed by a Technical Team Member.||Once agreements have been prepared and signed, the service technical team will prepare the necessary project cohorts and data extracts.||Project team members are given access within the local RDC data repository to the entirety of the service data required by the project (the microdata file). Project team members perform their own data preparation (extraction) from the requested service data.||The project plan is used by CIHI for cohort preparation and data preparation.|
|Accès aux données à distance et sur site||Prepared data is made accessible to analysts through a remote connection to PopData BC's Secure Research Environment (SRE). This can be accessed anywhere in Canada.||Prepared data is made accessible by direct provision to the project team, typically through secure file transfer protocol (SFTP).||Remote data access is not offered.||
Prepared data is made accessible to analysts on-site, or; through remote access via MCHP’s secure computing environment (within province only) that meets the Manitoba Health Information Act requirements.
|Prepared data is made accessible to analysts through a remote connection to the service’s secure facility (IDAVE or DHS). This can be access anywhere in Canada.||Prepared data is made accessible to analysts at three data access locations – NB-IRDT Fredericton, Saint John, and Moncton. Data must be accessed on-site.||Process to be outlined.||Prepared data is made accessible to analysts through a remote connection to NLCHI's Data Lab. This can be access anywhere in Canada by approved Data Lab Members only.||Prepared data is made accessible to analysts through the local Research Data Centres (RDC). Data must be accessed on-site.||Members of the project team will sign an agreement if accessing prepared data through a remote connection to the CIHI secure environment.|
|Orientation, aide communautaire, restrictions||Through the PopData BC Privacy Training, project team members are accredited to access data from the PopData service. Accreditation is available for researchers and analysts. Ethics approvals must remain valid throughout the period of project execution. Further statements were made relating to publications, students, but no standard terms provided for this yet. (See site-specific requirements)||The University of Calgary and the Alberta SPOR SUPPORT Unit provide training on the use of administrative data, and provide a SPOR data certificate on completion of the course. These are optional.||An orientation process must be undertaken prior to project execution by project analysts who will work onsite at HQC. Project teams must review and comply with a set of guidelines and regulations before project execution within HQC.||The MCHP eligibility review includes a check that project team members have passed the MCHP Orientation process.||For projects requesting access to data, orientation to the virtual environment (IDAVE or DHS) will be provided. Ethics approvals must remain valid throughout the period of project execution.||A Non-disclosure agreement is required to be signed.||Process to be outlined.||The project principal investigator must be PHIA certified.||Project team members must become “deemed employees” of Statistics Canada to access requested service data. To become “deemed employees” they must obtain security clearance, affirm an Oath of Office to Statistics Canada, and complete an orientation at a local RDC.||Not Applicable.|
*Si votre demande vise des données sur les Autochtones, d’autres étapes pourraient être nécessaires.