VCHRI’s Privacy Advisor provides practical guidance on privacy, security and data management, while supporting researchers in navigating legislative and institutional processes/requirements that may affect access to data.
- Information security best practices
Do you have questions about encryption, data transfer, or data storage? VCHRI’s Privacy Advisor can help you ensure you are implementing the best security processes into your research project.
- Secondary use data from VCH
The VCHRI Privacy Advisor reports both to VCHRI and VCH’s Data Release Management Office (DRMO). The DRMO’s mandate is to facilitate data access for operations and research across VCH and to make data extracts available specifically for research projects. If you need data from VCH Decision Support or data from multiple departments across VCH, the DRMO is a great resource.
Refer to Overview of Data Available for Research Projects in the VCH’s Data Warehouse.
- Data linking across parties
Are you undertaking a project that requires data to be linked across multiple organizations (e.g., VCH, BC Ambulance, BC Renal Agency or the Ministry of Health data sources)? Are you considering linking health data to data from non-health organizations, such as law enforcement or insurance data?
These types of projects may take longer than expected due to the need for legal agreements and coordination by each party. Consider connecting with the VCHRI Privacy Advisor early in the design of your study to understand and get support in facilitating these processes.
- Third party applications
- Are you seeking to install third party software or application on the VCH Network or MedIT Network? Are you anticipating collecting VCH data in a third-party application? This may require a privacy and security review.
- Patient recruitment for research
- Patient information maintained by VCH is subject to the Freedom of Information and Protection of Privacy Act (FIPPA). This statute restricts public bodies, such as VCH from disclosing personal information of its clients to researchers for recruitment purposes. VCH maintains a Letter of Initial Contact process to support researchers in connecting with VCH clients.
VCHRI is leading the SPOR funded BC Health Research Connection Project. This initiative seeks to develop a patient engagement platform that will also support researchers in connecting with patients and the public.
For more information on the best ways to connect with VCH clients for research purposes, please contact the VCHRI Privacy Advisor early in your project.
- Provincial research projects
Are you undertaking a project that is recruiting at multiple health authorities or involving multiple partners across the health sector? The VCHRI Privacy Advisor can support you in engaging with across organizations.
VCH is part of a provincial Privacy and Research Group (known as PRAG). The mandate of PRAG is to provide a forum for health authority Privacy and Research leads to coordinate on common provincial research projects or projects that may become provincial in scope to better support and ensure projects meet our common requirements under the Freedom of Information and Protection of Privacy Act (FIPPA). This group is chaired by the VCHRI Privacy Advisor and a Research Privacy Specialist of the Vancouver Island Health Authority.
- Data management plans
A Data Management Plan (DMP) is a tool to document digital assets management practices. DMPs are expected to soon be a Tri-Agency requirement. The DMP outlines data governance, data documentation and metadata standards, data storage and preservation, and how data will be managed over time. The DMP may serve to document the data linking strategies between parties. A DMP includes most of the requirements of a Privacy Impact Assessment (PIA) and may replace a PIA in most situations, where agreed by all parties.
The VCHRI Privacy Advisor can support you in developing a DMP for your research project and guide you on data management best practices.
- Information sharing plans
An Information Sharing Plan (ISP) documents the process for sharing and linking data for secondary use purposes (quality improvement/evaluation and/or research) between two or more health organizations that are party to the General Health Information Sharing Agreement (GHISA). At present, the GHISA is a framework between the Ministry of Health and the regional health authorities in British Columbia for sharing health information.
The ISP is needed for research projects in scenarios where two or more GHISA parties are directly sharing data to facilitate the project and one party is taking on a data governance role (linking and de-identifying data and releasing it on behalf of the other parties). The ISP is not needed if all health organization data is transmitted and shared through Population Data BC (aka PopData).
If you have a cross-organizational project that might need an ISP, the VCHRI Privacy Advisor will support you through this process.
- Privacy impact assessments
A Privacy Impact Assessment (PIA) is a particular assessment that is conducted by an organization to determine if a current or proposed system, project, program or activity meets the requirements set out by relevant legislation and best practices. These requirements include ensuring collection, use and disclosure of personal information are authorized by legislation and that protection of the information meets reasonable security arrangements.
PIAs are not a requirement for Vancouver Coastal Health Research Institute approved research projects. The VCHRI Operational Research Approval process, the Research Ethics Board approval process and the coming Tri-Agency Data Management Plan requirements seek to identify the key privacy and security risks and include the basic requirements of the PIA.
Exceptions may include:
- Projects where one organization is taking a data governance role on behalf of other parties and the other parties are seeking assurances that their data remains protected. Examples might include the development of new provincial or pan Canadian Research Registries, or cross organizational projects involving significant data linkage;
- PIAs may also be done to support highly visible projects and to support funding requirements.
- System access
Do you need direct access to PARIS, IntraHealth Profile EMR, InSite, Sunset or CareConnect for research purposes?
Many older health systems at VCH were not designed to facilitate research access. Even if you already have access to these systems for provision of care purposes, you may require additional approvals to access these systems for research purposes.
If you know in advance that you will need data or access to one of these systems, please connect with the VCHRI Privacy Advisor to understand any hurdles.
- Other privacy resources
VCH, PHC, PHSA, and UBC have been working to align security policies. While this work is still ongoing, you should know that the basic security standards and requirements are similar.
- Guidelines and references
- VCH Letter of Initial Contact
- VCH Overview of Data Available for Research Projects
- VCH-PHC Data and Research Access Terms and Conditions
- Shared Health Organizations Portal (SHOP)
- Privacy and Security Awareness Week Message for Researchers – June 2018
- VCH Letter of Initial Contact Guidance Document - November 2018
- ARECCI Ethics Screening Tool
Anna Low, Privacy Advisor firstname.lastname@example.org