Abstract
Alberta's Tomorrow Project (ATP) is a longitudinal cohort that recruited 55,000 Alberta adults aged 35 to 69 between 2000 and 2015 to study the causes of cancer and chronic disease. This presentation traces how ATP's data collection and stewardship practices have evolved over more than two decades, and the regulatory and technical safeguards that govern them.
Early collection (2000–2008) relied on random digit dialing recruitment and paper surveys, requisitions, and consents, with a 2003 online questionnaire trial seeing little uptake among older participants. From 2008 to 2016, ATP added web-based recruitment and booking and a mobile study-center network that collected biological samples and physical measurements from roughly 30,000 participants across the province. Since 2016, collection has been fully digital, spanning web-based participant management, internal and external survey platforms, electronic consent, return of results, and laboratory and freezer inventory systems.
The legal basis for this work is described, centered on Alberta's Health Information Act and its delegation of oversight to research ethics boards, alongside consent requirements (predominantly express written consent, which is mandatory for linkage to administrative health data), privacy risk assessment, TCPS 2, and funder guidelines. Key safeguards include strict separation of direct identifiers from health data, tiered access that restricts the core research repository to the data team while providing staff a de-identified dataset, and comprehensive auditing of record viewing, creation, modification, and deletion.
Will Rosner will cover ATP's end-to-end data flow, organized as bronze, silver, and gold layers, from raw collection through a restricted repository to a de-identified release dataset for approved researchers, including the return of researcher-derived data to the cohort.
Presenter
Will Rosner
Will Rosner is a health sciences professional with 25+ years of experience working at the intersection of information systems and life/health sciences. Currently is a senior analyst with Alberta's Tomorrow Project (ATP) at Alberta Health Services.
Will manages the data behind one of Canada's largest longitudinal health cohorts, with over 55,000 participants and more than two billion data points. He is responsible for the data architecture, data security, quality standards, and the integrity of ATP’s research repository, and currently leads its redesign and migration to snowflake, including data warehouse restructuring, permissions review, and institutional change management.
Will holds an MSc in Clinical Biochemistry from Griffith University.
