The Research Data Access Framework is a consensus based document and was developed, and has been approved by, Population Data BC and all Data Stewards with data currently held at Population Data BC. The document is subject to change as Population Data BC expands its data holdings and new Data Stewards become involved.
Data Access Request - An application for data held at Population Data BC. This request includes researcher and analyst information, project details, cohort details, fields and files requested, data protection plans, and supporting documents. It is this document that is reviewed by Data Stewards. If approved, a Research Agreement is entered into between the Public Body and researcher(s).
Data Preparation Fee Agreement - An agreement between the researcher and Population Data BC for cost recovery for the preparation of data for the approved Data Access Request.
Data Steward - The position that is responsible for the stewardship of a Public Body’s data holdings, usually including approval of requests for access to data for research purposes.
Geomatics - The discipline of gathering, storing, processing, and delivery of geographic information, or spatially referenced information.
Identifiers - Information that identifies an individual or for which it is reasonably foreseeable in the circumstances of use that could be utilized, either alone or with other information, to identify an individual.
Information Sharing Agreement - For the purposes of Population Data BC, the agreement under the authority of the Freedom of Information and Protection of Privacy Act (i.e., a data contract) between the Public Body which is the steward of the data and the University of British Columbia that sets out the terms and conditions of data sharing and uses between those bodies. The ISA also includes provisions related to security controls and data linkages to ensure legislative compliance.
Privacy Impact Assessment - A requirement under the Freedom of Information and Protection of Privacy Act that provides a formal assessment of a new enactment, system, project or program to ensure compliance with Part 3 (Privacy) of the legislation.
Public Body - "Public Body" refers to an organizational entity, and is in contrast to private corporation or company. FIPPA defines Public Body as:
(a) a ministry of the government of British Columbia,
Research Agreement - An agreement between a researcher and the Public Body responsible for the data that sets out the terms and conditions of access to information for research purposes, including specific conditions on use, disclosure, retention, and final disposition of the data pursuant to FIPPA section 35.
Research Extract - Data that are extracted and prepared by Population Data BC for the purpose of disclosure to a researcher for an approved research project. This requires the existence of an approved Research Agreement.
Secure Research Environment - A computer server for the storage of and secure remote access to approved Research Extracts, for purposes of data analysis.
Population Data BC, a multi-university platform, is BC's first pan-provincial population data service. It is a nationally active and recognized data and education resource that facilitates interdisciplinary research and teaching on the determinants of human health, well-being and development.
Population Data BC acts as:
While respecting and adhering to legislation, policies, and protocols governing access to sensitive information and protecting individual privacy, Population Data BC’s work will strive to facilitate and expedite:
Population Data BC values:
Population Data BC holds population-wide individual-level data to develop linkages among these data, and to support access to these data for approved research purposes. Population Data BC is authorized to receive, store, manage, manipulate and further disclose data through Information Sharing Agreements with the Public Bodies that provide the data, as outlined in Population Data BC’s Privacy Impact Assessment. Population Data BC serves as a facilitating and coordinating third party for the creation of this resource for the research community.
The purpose of this framework is to provide a transparent mechanism for enabling access to data for research purposes while preserving the integrity and confidentiality of the data and retaining the integrity of data stewardship of the Public Bodies.This framework outlines general considerations in the adjudication of Data Access Requests.
The principles that inform this framework are:
The data access considerations contained herein build on data access documents from other local, national and international institutions, including the “Data Access Policy” that governed access to data from the BC Linked Health Database (BCLHD) from 1996 through 2009. The BCLHD was originally a cooperative venture between the British Columbia Ministry of Health Services and the Centre for Health Services and Policy Research, and later expanded to include the Vital Statistics Agency, BC Cancer Agency and WorkSafeBC.
Access to data from public bodies for research purposes is governed by a variety of legislation and supporting policies, including the BC’s Freedom of Information and Protection of Privacy Act (FIPPA), initially proclaimed in 1993. This Act provides individuals with personal information privacy rights and, under specified circumstances, access to personal information that is collected or controlled by public bodies in British Columbia. Government ministries, provincial agencies, and universities are all considered public bodies. Population Data BC, as partnership within BC universities, is bound by the same provisions as its “parent” organizations, under the Freedom of Information and Protection of Privacy Act. The Information Sharing Agreements, such as the one between the University of British Columbia and the Ministry of Health Services, detail the authorities and legal terms and conditions for the collection, use, and disclosure of personal information between these two public bodies. Population Data BC is covered by these provisions.
In compliance with statutory requirements, Population Data BC has completed a Privacy Impact Assessment that outlines its privacy and security compliance, including detailing its risk management framework, consisting of accountability and advisory input, physical security, network security, and human resource controls.
Access to data for research purposes under the Freedom of Information and Protection of Privacy Act is approved by the Data Steward of the Public Body responsible for the data. Each application is assessed on its own merits.
To be considered for approval by the Public Body, a Data Access Request must
Scientific merit is met if the research is funded by a recognized granting agency, such as Social Sciences and Humanities Research Council of Canada, Canadian Institutes of Health Research, or Natural Sciences and Engineering Research Council of Canada. In the case of graduate students, a letter from the supervisor supporting the research must be provided and serves the purpose of proof of scientific merit. In the absence of peer review funding, the relevant Data Steward(s) can request a one-off peer review to determine eligibility, at its discretion.
It should be noted that the above requirements are necessary for review, but may not be sufficient, in and of themselves, for approval by the Data Steward of the Public Body. Additional requirements may arise that are project specific, and this framework may be updated with such requirements as they become relevant and routine.
A researcher is:
Only researchers who will conduct their analyses in Canada are eligible to apply for access to data pursuant to FIPPA section 33.2(k).
Population Data BC is a central entry point for access to research data administered by Population Data BC. Population Data BC’s specific activities in support of Data Access Requests include:
Population Data BC supports the Data Access Request process by facilitating the submission of completed Data Access Requests to the appropriate Data Steward(s).
Data Access Requests are assessed on their individual merits.
Among the criteria considered by public bodies when reviewing a request for research Data Access Request are those established under Section 35 of the Freedom of Information and Protection of Privacy Act, such as:
A Researcher may request linkage to data not administered by Population Data BC. There are two likely types of data sources to which a Researcher would seek linkage: a) data from a Public Body which is not covered by an Information Sharing Agreement with Population Data BC b) Researcher-collected data.
Data from a Public Body which is not covered by an Information Sharing Agreement with Population Data BC
For linking to data from a Public Body, the review process would be substantially similar to that established for data administered by Population Data BC, with Data Stewards performing their adjudication function, and Researcher Liaison coordinating the application and review process. Population Data BC would additionally require an Information Sharing Agreement which may be limited to the single research project in order to have data transmitted to Population Data BC.
For linkage to Researcher-collected Data, there will be additional requirements for review:
It is recommended that Researchers submit the aforementioned additional requirements to Population Data BC prior to Data collection or pursuit of the research project, so that Population Data BC together with the Data Stewards can ensure the relevant information is collected according to a suitable process for subsequent Data Access Requests.
If consents and relevant legislation allows, and the data are of sufficient interest, in the above cases Population Data BC may choose to initiate discussions with the Public Body or the Researcher in order to support these data to being made available for access by other Researchers via Population Data BC. This would involve negotiation of Information Sharing Agreement(s).
Once a Data Access Request is approved by the Data Steward, researchers enter into a Research Agreement with each relevant Public Body and a Data Preparation Agreement with Population Data BC. Data preparation is the process of finalizing the data for the study population/cohort(s) of interest as well as extracting the data for these population(s) in accordance with the approved Data Access Request, including setting up any needed documentation.
With limited exceptions as approved by the public bodies, the Research Extracts will be stored on the Secure Research Environment provided by Population Data BC. Access to these data will be provided only via encrypted Virtual Private Network-type services, through a firewall and use of a SecurID token for authentication. The Secure Research Environment will provide storage and back up of data while in use for the approved purposes, as well as analytical software necessary for the research process.
Through the Research Agreement and Data Preparation Agreement, the researcher agrees to all conditions of use set by the public bodies that retain stewardship of the data, which may include (but are not limited to) the following:
Population Data BC will undertake the following broad responsibilities:
If Population Data BC learns of or suspects non-compliance with a Research Agreement, Population Data BC will immediately notify all relevant public bodies that are responsible for the response. Examples of possible responses may include any or all of the following, plus other remedies available under the terms of Research Agreements or under law, at the discretion of the public bodies:
The role of the public bodies in relation to Population Data BC, will be to