PRIVACY POLICIES AND PROCEDURES
Population Data BC is a pan-provincial, multi-institutional platform whose mission is to foster insights into human health, well-being, and development by advancing research through data and education. Population Data BC has a physical presence at Simon Fraser University (SFU), University of Victoria (UVic), and University of British Columbia (UBC). Its UBC site holds Individual-level Personal Information from Provincial Ministries and other public body data providers. Population Data BC does not have its own research agenda.
To date, data for research in human health, well-being, and development (at least within BC) have typically been available only within single sector(s) (e.g. health, education, or early childhood), and linkages have occurred only within a particular disciplinary area. A particular feature of Population Data BC is the linkage of BC population data across various sectors, such as health, education, and early childhood, for research purposes only. Access to such data creates the potential for fundamental advances in understanding the complex interplay of influences on human health, well-being, and development. Such evidence can be used to inform future social policy and investment decisions. Facilitating access to such data for public-interest research purposes, while at the same time ensuring the protection of privacy and confidentiality of individuals about whom the data pertain, is the mandate of Population Data BC.
Population Data BC enters into separate Information Sharing Agreements, Data Directives or other data sharing agreements with government ministries and public agencies (collectively, the “Data Stewards”) for health information and other Personal Information on the population of British Columbia relating to human health, well-being and development. Personal Information which Population Data BC holds from the Data Stewards under these agreements are referred to as “Data”. Each agency retains ownership of its particular Data set(s) and reviews and approves requests for access to its Data.
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Privacy and security
Respecting personal privacy, safeguarding confidential information, and ensuring security are critical to Population Data BC’s mandate. To this end, Population Data BC has in place a privacy risk management framework that consists of many components, including confidentiality agreements, privacy training, a Privacy Impact Assessment, a public website with frequently asked questions and responses, accountability and advisory input, physical security, network security, and human resources controls, including the presence of a Privacy Officer. Other Population Data BC privacy and security controls include:
- Keeping Population Data BC’s privacy principles, policies, procedures and practices current and compliant with existing legislation.
- Monitoring developments in privacy legislation, privacy enhancing technologies and public opinion, and adapting to conform as necessary.
- Meeting and exceeding recognized standards of physical, technical, and procedural Data protection and security.
- Fostering transparency and accountability and increasing awareness of Population Data BC’s privacy principles, policies and procedures.
- Fostering a culture of privacy at Population Data BC.
- Supporting staff in applying Population Data BC’s privacy principles, policies and procedures.
- Supporting controlled access to, and responsible use of, Personal Information under Population Data BC’s management.
Population Data BC’ Privacy Officer has a number of designated roles and responsibilities, including:
- Developing and updating Population Data BC’s privacy and security policies and procedures.
- Responding to internal and external enquiries or complaints about Population Data BC’s privacy and security policies and procedures.
- Staying informed of relevant privacy and security developments.
- Providing privacy and information security training to new employees, Researchers, and other stakeholders, as necessary, and providing up-to-date annual organisational privacy and information security training.
- Managing and reporting on privacy-related incidents.
More information on Population Data BC’s mandate, background, operations, and privacy and security measures is available at Population Data BC’s public website, www.popdata.bc.ca, and from Population Data BC’s Privacy Impact Assessment, which is available upon request.
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Public bodies in B.C., such as government agencies, routinely collect information on individuals for administrative purposes, such as making payment for services to service providers or registering student progress through the school system. This type of information is a fundamental tool for population-based, longitudinal studies in research on human health, well-being and development.
In 1990, the Centre for Health Services and Policy Research (CHSPR) at the University of British Columbia and the BC Ministry of Health Services entered into an agreement to create the BC Linked Health Database (BCLHD) – a resource designed to realize the research and planning potential of existing databases. Through significant investments from the Canada Foundation for Innovation, the BC Ministry of Advanced Education, and the Michael Smith Foundation for Health Research, Population Data BC was established in 2008 as a platform for cross-sectoral, longitudinal, population-wide research, largely built on the BCLHD model and using the BC Linked Health Database’s 15+ years of experience in successfully linking administrative health services data.1
The BCLHD facilitated over one hundred and fifty research projects on contemporary issues in applied health services and population health. CHSPR and its predecessor organisation had a 30 year history of responsible handling of sensitive Data.
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Governance and management
Population Data BC operates within a multi-tier governance and management framework, which includes the following:
- The Research Data Access Committee includes Data Stewards from each organisation whose Data Population Data BC administers or is soon to administer. Its objectives are to advise and support Population Data BC and to ensure that the policy and process framework for access to Data meets their privacy and security expectations. This group counsels the Advisory Board.
- The Advisory Board convenes on a regular (typically monthly and as needed) basis and plays a critical role in guiding Population Data BC and its operations on core issues, such as strategy, policy, funding, and security. The Advisory Board is comprised of leaders from each of the partner organisations and representation from multiple institutions.
- The Governance Oversight Committee is a standing committee of Population Data BC whose purpose is to guide and support the operations of Population Data BC. The Governance Oversight Committee oversees the Advisory Board and is made up of VPs of Research at BC’s partner universities, two Data Stewards, two members of Population Data BC’s Advisory Board, and two researchers.
- The Operations Committee plans and reviews the operational functions of Population Data BC, and ensures they are well coordinated amongst the partner universities. It is comprised of members from the University of British Columbia, Simon Fraser University, and the University of Victoria.
- Population Data BC’s Executive Director and unit Leads are involved in the day-to-day management of Population Data BC. The Executive Director has delegated accountability and responsibility for Population Data BC’s functions and is responsible to the Advisory Board and Governance Oversight Committee.
- Additionally, Population Data BC (UBC) is accountable to both Data Stewards and the public through signed data sharing agreements.
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Scope of these policies and procedures
The principles and policies outlined apply to Population Data BC’s Personal Information holdings (the Data) from various Data Stewards.
1 The BC Linked Health Database (BCLHD) was developed and housed by the Centre for Health Services and Policy Research. It included Data from the Ministry of Health Services, Vital Statistics, the BC Cancer Agency and WorkSafeBC. The BCLHD successfully provided access to these Data to the research community in a privacy-sensitive manner for approved research projects. Population Data BC is largely built on the BCLHD model.
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