Developing safe, privacy-sensitive and ethical infrastructure to support research

To achieve all of the above categories, we need to successfully develop and operate the right sociotechnical systems. Within this category, IJPDS encourages new submissions containing details and developments around secure environments, metadata, data quality, information governance etc.

 

• ‘Leading by Science’ through Covid-19: the GDPR & Automated Decision-Making

  Miranda Jane Mourby

  Published online: Apr 7, 2021

• “If it’s gonnae make things better then I don’t have any issue”: Perspectives of People Who Use Drugs on the Use of Administrative Data for Research

  Louise Marryat, Hazel Booth, Sarah Gray, Andrea Mohan, Senga Robertson, Sreekanth Thekkumkara, Camila Biazus-Dalcin

  Published online: Jun 30, 2026

• A bespoke data linkage of an IVF clinical quality registry to population health datasets; methods and performance

  Georgina M Chambers, Stephanie K.Y. Choi, Katie Irvine, Christos Venetis, Katie Harris, Alys Havard, Robert J Norman, Kei Lui, William Ledger, Louisa R Jorm

  Published online: Sep 13, 2021

• Data Resource Profile: A Guide for Constructing School-to-work Sequence Analysis Trajectories Using the Longitudinal Education Outcomes (LEO) Data

  Shivani Sickotra

  Published online: Mar 25, 2025

• A Metadata Manifesto: The Need for Global Health Metadata

  Gabriel E Fabreau, Evan P Minty, Danielle A Southern, Hude Quan, William A Ghali

  Published online: Aug 21, 2018

• A profile of the Grampian Data Safe Haven, a regional Scottish safe haven for health and population data research

  Katherine O'Sullivan, Katie Wilde

  Published online: Mar 16, 2023

• A survey of public attitudes toward secondary research governance oversight: Evidence from Singapore's TRUST platform

  Hui Jin Toh [Joint first author], Marthe Smedinga [Joint first author], Faisal Feroz, Julian Savulescu, G. Owen Schaefer

  Published online: Mar 23, 2026

• Achieving quality primary care data: a description of the Canadian Primary Care Sentinel Surveillance Network data capture, extraction, and processing in Alberta

  Stephanie Garies, Michael Cummings, Brian Forst, Kerry McBrien, Boglarka Soos, Matt Taylor, Neil Drummond, Donna Manca, Kimberley Duerksen, Hude Quan, Tyler Williamson

  Published online: Nov 20, 2019

• Adapting historical clinical genetic test records for anonymised data linkage: obstacles and opportunities

  Robert T. Maddison, Karen R. Reed, Rebecca Cannings-John, Fiona Lugg-Widger, Thomas Stoneman, Sarah Anderson, Andrew E. Fry

  Published online: Feb 20, 2025

• Administrative Data Research Northern Ireland (ADR NI)

  Dermot O'Reilly, Orla Bateson, Gemma McGreevy, Chris Snoddy, Tracy Power

  Published online: Feb 25, 2020

• ADRF Network Hosts Research Conference to Advance Uses of Administrative Data in the United States

  Monica M King

  Published online: Apr 20, 2021

• An overview on synthetic administrative data for research

  Theodora Kokosi, Bianca De Stavola, Robin Mitra, Lora Frayling, Aiden Doherty, Iain Dove, Pam Sonnenberg, Katie Harron

  Published online: May 23, 2022

• Attitudes towards the collection and linkage of maltreatment data for research: A qualitative study

  Gwenllian Moody, Dr Rebecca Cannings-John, Professor Kerenza Hood, Professor Michael Robling

  Published online: Jan 26, 2022

• Canadian Metadata Catalogue for Health Science Research

  Allan Garland, Peter Dodek, Kednapa Thavorn, Rita Wissa, Wendy Sligl, Wynona Marleau, M. Elizabeth Wilcox, Isabel Fortier, for the Sepsis Canada Network

  Published online: Jul 9, 2026

• Centre for Health Record Linkage

  expanding access to linked population data for NSW and the ACT, Australia

  Katie Irvine, Rick Hall, Lee Taylor

  Published online: Oct 19, 2020

• Challenges Associated with Cross-Jurisdictional Analyses using Administrative Health Data and Primary Care Electronic Medical Records in Canada

  Alan Katz, Jennifer Enns, Sabrina T Wong, Tyler Williamson, Alexander Singer, Kimberlyn McGrail, Jeffery A Bakal, Carole Taylor, Sandra Peterson

  Published online: Oct 5, 2018

• Co-creating an Inclusion, Diversity, Equity, and Accessibility (IDEA) Strategy in a Pan-Canadian Health Data Research Network

  Morgan Stirling, Laura Bowler, Jeffrey Morgan, David Yang, Lisa Nowlan, Kate Millberry, Kelli Buckreus, Jennifer Hagen, Jannath Naveed, Kim McGrail, Nathan Nickel, Amy Freier

  Published online: Aug 13, 2026

• Co-developing resources for better public understanding of Longitudinal Population Study Data and the Law

  Kirsteen C. Campbell, Sarah Chave, Rosie Hill, Mhairi Docherty, Michael Gregg, Emma Turner, Katharine Evans, Jacqui Oakley, Stela McLachlan, Alex Bailey, Cassie Smith, Rebecca Whitehorn, Lidis Garbovan, Robin Flaig, Andy Boyd

  Published online: Nov 5, 2025

• Coding reliability and agreement of international classification of disease, 10th revision (ICD-10) codes in emergency department data

  Mingkai Peng, Cathy Eastwood, Alicia Boxill, Rachel Joy Jolley, Laura Rutherford, Karen Carlson, Stafford Dean, Hude Quan

  Published online: Jul 26, 2018

• Cohort Profile Update: Reflecting back and looking ahead: Updating the Comparative Outcomes and Service Utilization Trends (COAST) Study to include 28 years of linked data from people with and without HIV in British Columbia, Canada

  Michael O. Budu, Katherine W. Kooij, Kate Heath, Taylor McLinden, Claudette Cardinal, Scott D. Emerson, Paul Sereda, Jason Trigg, Jenny Li, Erin Ding, Mark W. Hull, Kate Salters, Viviane D. Lima, Rolando Barrios, Julio S. G. Montaner, Robert S. Hogg, for the COAST Study Team

  Published online: Mar 6, 2025

• The Common governance model: a way to avoid data segregation between existing trusted research environment

  Fatemeh Torabi, Chris Orton, Emma Squires, Sharon Heys , Richard Hier, Ronan A. Lyons, Simon Thompson

  Published online: Nov 9, 2023

• Community-based Health Data Cooperatives Towards Improving the Immigrant Community Health: A Scoping Review to Inform Policy and Practice

  Iffat Naeem, Hossain AKM Nurul, Marcus Vaska, Suzanne Goopy, Ruksana Rashid, Anusha Kassan, Fariba Aghajafari, Ilyan Ferrer, Ahsan Kazi, Iftekhar Sadi, Maeve O'Beirne, Charles Leduc, Tanvir C Turin

  Published online: Jun 23, 2020

• The Concept Dictionary and Glossary at MCHP

  Tools and Techniques to Support a Population Research Data Repository

  Mark Smith, Ken Turner, Ruth Bond, Tiva Kawakami, Leslie Leon Roos

  Published online: Jul 19, 2021

• Constructing a toolkit to evaluate quality of state and local administrative data

  Zachary H. Seeskin, Gabriel Ugarte, A. Rupa Datta

  Published online: Jan 31, 2019

• Data Centre Profile: The Provincial Health Data Centre of the Western Cape Province, South Africa

  Eduan Coetzee, Krish Vallabhjee, Ian de Vega, Melvin Moodley, Lesley Shand, Adam Loff, Naadir Fredericks, Robin Dyers, Renier van Rooyen, Andrew Boulle, Kasturi Buddiga, Cara Pienaar, Florence Phelanyane, Nesbert Zinyakatira, Themba Mutemaringa, Mariette Smith, Nicki Tiffin, Alexa Heekes

  Published online: Nov 20, 2019