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.

 

• Four checks for low-fidelity synthetic data: recommendations for disclosure control and quality evaluation

  Gillian M. Raab, Sophie McCall, Liam Cavin

  Published online: Oct 28, 2025

• Four Questions to Guide Decision-Making for Data Sharing and Integration

  Amy Hawn Nelson, Sharon Zanti

  Published online: Oct 4, 2023

• Generating synthetic identifiers to support development and evaluation of data linkage methods

  Joseph Lam, Andy Boyd, Robin Linacre, Ruth Blackburn, Katie Harron

  Published online: Jul 1, 2024

• Guidance for researchers wanting to link NHS data using non-consent approaches: a thematic analysis of feedback from the Health Research Authority Confidentiality Advisory Group

  A thematic analysis of feedback from the Health Research Authority Confidentiality Advisory Group

  Lauren Cross, Miss, Lauren Emma Carson, Dr, Amelia Jewell, Miss, Margaret Heslin, Dr, David Osborn, Professor, Johnny Downs, Dr, Robert Stewart, Professor

  Published online: Oct 2, 2020

• Health Data Governance for Research Use in Alberta

  Namneet Sandhu, Sarah Whittle, Danielle A Southern, Bing Li, Erik Youngson, Jeffery A Bakal, Christie Mcleod, Lexi Hilderman, Tyler S Williamson, Ken Cheligeer, Robin L Walker, Padma Kaul, Hude Quan, Cathy A Eastwood

  Published online: Oct 26, 2023

• Health Data Linkage for Public Interest Research in the UK: Key Obstacles and Solutions

  Miranda Jane Mourby, James Doidge, Kerina H Jones, Stergios Aidinlis, Hannah Smith, Jessica Bell, Ruth Gilbert, Peter Dutey-Magni, Jane Kaye

  Published online: Apr 2, 2019

• ICES: Data, Discovery, Better Health

  Michael J Schull, Mahmoud Azimaee, Marcel Marra, Rosario G Cartagena, Marian J Vermeulen, Minnie M Ho, Astrid Guttmann

  Published online: Mar 11, 2020

• Identifying researcher learning needs to develop online training for UK researchers working with administrative data: CENTRIC training

  Fiona Victoria Lugg-Widger, Kim Munnery, Julia Townson, Rob Trubey, Michael Robling

  Published online: Feb 2, 2022

• Improving transparency in data access processes: Developing best practice standards and promoting system-wide change through a competitive funding call

  Yemi Macaulay, Ester Bellavia , Rachel Brophy, Angela Coulter, Ben Glampson, Bethany Gilbert, Alan Holcroft, Erik Mayer, Edel McNamara, Katherine O'Sullivan, Paola Quattroni, David Seymour, Yvonne Silove , Doreen Tembo, Andrew D Morris, Cassie Smith, Andy Boyd

  Published online: Jul 22, 2025

• Integrating public engagement to promote transparent data use in a new UK-wide birth cohort

  Alyce Raybould, Karen Dennison, Orla McBride, Erica Wong, Lisa Calderwood, Pasco Fearon, Alissa Goodman

  Published online: Dec 4, 2025

• Kids' Environment and Health Cohort: Database Protocol

  Selin Akaraci, Alison Macfarlane, Amal Rammah, Emilie Courtin, Esther Lewis, Faith Miller, Jason Powell-Bavester, Jessica Mitchell, Joana Cruz, Matthew Lilliman, Niloofar Shoari, Samantha Hajna, Steven Cummins, Tolu Adedire, Vahe Nafilyan, Pia Hardelid

  Published online: Feb 13, 2025

• A Landscape Overview of Integrated Data Systems Funding and Staffing Models Across the U.S.

  Amy Hawn Nelson, Sharon Zanti, Rebecca S. Pepe, Isabel Algrant, Renette Lee, Della Jenkins

  Published online: Apr 29, 2026

• Laying the Foundation for Real-World Evidence Studies of Psoriatic Disease in Newfoundland and Labrador

  Winifred Badaiki, Evelyn Pyper, Kendra Lester, Janelle Skeard, Michelle Penney, Janey Shin, Brenda Fisher, Huong Hew, Susanne Gulliver, Wayne Gulliver, Proton Rahman

  Published online: Sep 2, 2022

• Linking Digital Footprint Data into Longitudinal Population Studies

  Romana Burgess, Andy Boyd, Oliver SP Davis, Louise AC Millard, Mark Mumme, Sarah Robertson, Andy Skinner, Zhuoni Xiao, Anya Skatova

  Published online: Jun 3, 2025

• Linking education and hospital data in England: linkage process and quality

  Nicolás Libuy, Katie Harron, Ruth Gilbert, Richard Caulton, Ellen Cameron, Ruth Blackburn

  Published online: Sep 16, 2021

• Machine learning models in trusted research environments -- understanding operational risks

  Felix Ritchie, Amy Tilbrook, Christian Cole, Emily Jefferson, Susan Krueger, Esma Mansouri-Bensassi, Simon Rogers, Jim Smith

  Published online: Dec 14, 2023

• Minimum elements for reporting a feasibility assessment of algorithms based on routinely collected health data for multi-jurisdiction use: Health Data Research Network Canada recommendations

  Naomi C. Hamm, Sharon Bartholomew, Yinshan Zhao, Sandra Peterson, Saeed Al-Azazi, Kimberlyn McGrail , Lisa Lix

  Published online: Jan 28, 2025

• Mother and Infant Research Electronic Data Analysis (MIREDA): A protocol for creating a common data model for federated analysis of UK birth cohorts and the life course

  Mike Seaborne, Hope Jones, Neil Cockburn, Stevo Durbaba, Arturo González-Izquierdo, Amy Hough, Dan Mason, Carlos Sánchez-Soriano, Chris Orton, Armando Méndez-Villalon, Tom Giles, David Ford, Phillip Quinlan, Krish Nirantharakumar, Lucilla Poston, Rebecca Reynolds, Gillian Santorelli, Sinead Brophy

  Published online: Sep 12, 2024

• National data opt out programme: consequences for maternity services in England

  Kate Marie Lewis, Pia Hardelid

  Published online: Jan 30, 2020

• Not in Employment, Education or Training (NEET); more than a youth policy issue

  Associate Professor Francis Mitrou, Professor Michele Haynes, Associate Professor Francisco Perales, Emeritus Professor Stephen R Zubrick, Professor Janeen Baxter

  Published online: Sep 21, 2021

• Open science and phenotyping in UK administrative health, education and social care data: the ECHILD phenotype code list repository

  Matthew A Jay, Kate Lewis, Difei Shi, Rebecca Langella, Tony Stone, Sorcha Ní Chobhthaigh, Ania Zylbersztejn, Ruth Blackburn, Katie Harron

  Published online: May 13, 2025

• Overcoming ethical and legal obstacles to data linkage in health research: stakeholder perspectives

  Julie-Anne Smit, Rieke van der Graaf , Menno Mostert , Ilonca Vaartjes , Mira Zuidgeest , Diederik Grobbee, Johannes J.M. van Delden

  Published online: Sep 25, 2023

• Participant acceptability of digital footprint data collection strategies: an exemplar approach to participant engagement and involvement in the ALSPAC birth cohort study.

  Kate Shiells, Nina Di Cara, Anya Skatova, Oliver Davis, Claire Haworth, Andy Skinner, Richard Thomas, Alastair Tanner, John Macleod, Nicholas Timpson, Andy Boyd

  Published online: Mar 16, 2022

• Placing conditions on sharing general practice data for research: Recommendations from two community juries

  Annette Joy Braunack-Mayer, Heidi Green, Lucy Carolan, Belinda Fabrianesi, Carolan Adams, Felicity Flack, Anthony Brown, Kate Miller, Carrie Hayter, Joel Rhee, Alberto Nettel-Aguirre, Justin Bielby, Matthew Wright-Simon

  Published online: Aug 19, 2025

• Population Data BC: Supporting population data science in British Columbia

  Tavinder Kaur Ark, Sarah Kesselring, Brent Hills, Kim McGrail

  Published online: Mar 26, 2020

• Population Data Centre Profile - The Western Australian Data Linkage Branch

  Steve Hodges, Tom Eitelhuber, Alexandra Merchant, Janine Alan

  Published online: Mar 11, 2020

• Population Data Centre Profile: SA NT DataLink (South Australia and Northern Territory)

  Matthias Schneider, Christopher Gordon Radbone, Stacy Ann Vasquez, Miroslav Palfy, Andrew Kristjan Stanley

  Published online: Dec 5, 2019

• Population Data Centre Profile: The Manitoba Centre for Health Policy

  Alan Katz, Jennifer Enns, Mark Smith, Charles Burchill, Ken Turner, Dave Towns

  Published online: Feb 25, 2020

• Population Data Centre Profiles: Centre for Data Linkage

  James H Boyd, Sean Randall, Adrian P Brown, Max Maller, Davie Botes, Margo Gillies, Anna Ferrante

  Published online: Mar 11, 2020

• A Position Statement on Population Data Science:

  The science of data about people

  Kim McGrail, Ros Moran, Christine O'Keefe, David Preen, Hude Quan, Claudia Sanmartin, Michael Schull, Mark Smith, Christine Williams, Tyler Williamson, Grant Wyper, Rachael Moorin, Hye-Chung Kum, Kerina Jones, Ashley Akbari, Tell Bennett, Andrew Boyd, Fabrizio Carinci, Xinjie Cui, Spiros Denaxas, Nadine Dougall, David Ford, Russell S Kirby, Milton Kotelchuck

  Published online: Feb 22, 2018

• Prevalence of Down's Syndrome in England, 1998–2013

  Comparison of linked surveillance data and electronic health records

  James C Doidge, Joan K Morris, Katie L Harron, Sarah Stevens, Ruth Gilbert

  Published online: Mar 19, 2020

• A Privacy Attack on Multiple Dynamic Match-key based Privacy-Preserving Record Linkage

  Anushka Vidanage, Thilina Ranbaduge, Peter Christen, Sean Randall

  Published online: Aug 11, 2020

• Privacy preserving linkage using multiple dynamic match keys

  Sean Randall, Adrian P Brown, Anna M Ferrante, James H Boyd

  Published online: Jul 19, 2021

• Putting Voluntary, Charity, and Social Enterprise (VCSE) Organisations at the Heart of Research: Creating a Northern Ireland VCSE Research Directory

  Eric Spikol, Enya Redican, Orla McBride, Jamie Murphy, Mark Shevlin

  Published online: May 14, 2026

• Quantifying Depression-Related Language on Social Media During the COVID-19 Pandemic

  Brent Davis, Dawn Estes McKnight, Daniela Teodorescu, Anabel Quan-Haase, Rumi Chunara, Alona Fyshe, Daniel J. Lizotte

  Published online: Mar 30, 2022

• Record linkage as a vital key player for the COVID-19 syndemic -- The call for legal harmonization to overcome research challenges

  Julia Nadine Doetsch, Eero Kajantie, Vasco Dias, Marit S. Indredavik, Randi Kallar Devold, Raquel Teixeira, Jarkko Reittu, Henrique Barros

  Published online: Jun 13, 2023

• Research data use in a digital society: a deliberative public engagement

  Kimberlyn M. McGrail, Jack Teng, Colene Bentley, Kieran C. O'Doherty, Michael M. Burgess

  Published online: Oct 14, 2024

• A Review of Synthetic Data Terminology for Privacy Preserving Use Cases

  Lora Frayling, Shah Suraj Bharat, Elizabeth Pattinson, Joshua Stock, Fiona Lugg-Widger, Emma Gordon, Emily Oliver

  Published online: Oct 15, 2025

• The SEEDS of Indigenous Population Health Data Linkage

  Robyn Rowe, Stephanie Russo Carroll, Chyloe Healy, Desi Rodriguez-Lonebear, Jennifer D Walker

  Published online: Jun 30, 2021

• Semi-automated data provenance tracking for transparent data production and linkage to enhance auditing and quality assurance in Trusted Research Environments

  Katherine O'Sullivan, Milan Markovic, Jaroslaw Dymiter, Bernhard Scheliga, Chinasa Odo, Katie Wilde

  Published online: Feb 6, 2025

• Sensing pedestrian flows for real-time assessment of non-pharmaceutical policy interventions during the COVID-19 pandemic

  Jonas Klingwort, Sofie De Broe, Sven Alexander Brocker

  Published online: Jan 13, 2022

• Study protocol: Generation Victoria (GenV) special care nursery registry

  Jing Wang, Yanhong Jessika Hu, Lana Collins, Anna Fedyukova, Varnika Aggarwal, Fiona Mensah, Jeanie L. Y. Cheong, Melissa Wake, and on behalf of the GenV Newborns Working Group

  Published online: Jan 10, 2024

• Sussex Integrated Dataset (SID) Data Resource Profile

  Elizabeth Ford, Jon Elsom, Paul Molyneux, David Crees, Yemisi Bakare, Dan Hughes

  Published online: Jun 17, 2026

• Tasmanian Data Linkage Unit

  Supporting innovative research, planning and policy formulation in Australia through the provision of high-quality linked-data services.

  Brian Stokes, Nadine Wiggins, Tim Albion, Alison Venn

  Published online: Feb 25, 2020

• The Center for Data and Knowledge Integration for Health (CIDACS)

  An Experience of Linking Health and Social Data in Brazil

  Mauricio Lima Barreto, Laura Rodrigues, Spiros Denaxas, George Barbosa, M. Sanni Ali, Manoel Barral-Netto, Gerson Penna, Robespierre Pita, Carlos Teles, Roberto P Carreiro, Rosemeire Fiaccone, Liliana Cabral, Marcos Ennes Barreto, Bethania de Araujo Almeida, Maria Yuri Ichihara, Liam Smeeth

  Published online: Nov 20, 2019

• The centre for health informatics: a novel approach to accelerating the field of health data science

  Danielle A Southern, Cathy A Eastwood, Erin O'Connor, Chelsea Doktorchik, Marcello Tonelli, Jon Meddings, Hude Quan, Tyler S Williamson

  Published online: Mar 21, 2024

• The International Population Data Linkage Network – Banff and Beyond

  William A Ghali, Michael J Schull

  Published online: Aug 28, 2018

• The Population Health Research Network - Population Data Centre Profile

  Felicity Flack, Merran Smith

  Published online: Nov 20, 2019

• The Research Data Centre of the German Federal Employment Agency at the Institute for Employment Research (RDC-IAB)

  Linked Microdata for Labour Market Research

  Manfred Antoni, Alexandra Schmucker

  Published online: Nov 20, 2019

• The Road to Hell Winds on: The High Administrative Burden of Maintaining Linked National Health Data

  Julie A. Taylor, Christina Pagel, Ferran Espuny Pujol, Sonya Crowe

  Published online: Apr 30, 2026