 A new Working Group is being formed to explore the strategic need for developing — and better define the potential scope of — a new proposed standard on user-centric consent-driven approach to data access, interoperability and mobility. Rationale The need for a new standard is borne out of recognition that conventional consent models typically involve a one-time, static agreement at the point of data collection – a typical binary choice that is either “consent” or “do not consent” to using a service or not. Once given, this consent tends to be irrevocable, leaving little control to individuals over how their data is used over time. This lack of flexibility becomes increasingly problematic as the scope and nature of data applications evolve. Background Modern consent-driven approaches are regarded as ways to empower individuals with control over their data. This includes the ability to ask, grant, modify or revoke consent based on changing circumstances or preferences to provide more value or benefit to the individual. Unlike traditional models that often inhibit data mobility, user-centric consent represents a shift towards a more user-centric, responsible model for managing data consent and data mobility. It has become imperative to address the shortcomings of traditional consent models and explore innovative alternatives. The Digital Governance Standards Institute was requested to facilitate the development of a common consensus-based standard for user-centric consent to highlight requirements that will provide individuals more transparency (see / know) in how their data is being used. SPC noted that there are already existing standards in the DGSI catalogue that speak generally to consent. It was noted in health that there’s a lot of data and data sharing that happens without patient consent. It’s written into legislation that certain things can happen without patient’s consent. The data is collected in the health system and then can be used after that more broadly as needed so the standards will require a more focused scope than what was presented. Why Join the Working Group The process involved in developing standards is open to anyone — and representation from a broad cross-section of the Canadian public is essential to ensure the process is not dominated by special interest groups, industry players, or self-interested stakeholders. Sharing your perspectives and experiences is vital to ensure the process and the resulting standard can be proportionate, balanced, and unbiased. How to Get Involved Anyone who wants to take part in the Working Group should notify Darryl Kingston, Executive Director of the Digital Governance Standards Institute, by no later than December 20th. The first Working Group meeting will be scheduled in January 2025. Participants interested in joining the Working Group are also encouraged to bring forward use cases that may assist in better defining the scope. A revised new work item proposal will then be submitted to SPC for approval if there are cases that can be determined that clearly express the need for the standard. |
Participation in this and other standards-development initiatives relevant to information privacy, access to information, and data governance qualifies for CPD credits applicable toward PACC Professional certification.
