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.

 

• 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

• 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

• 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

• 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

• 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 SPOR-Canadian Data Platform: a national initiative to facilitate data rich multi-jurisdictional research

  Lindsey Todd Dahl, Jennifer D Walker, Michael Schull, P. Alison Paprica, James Ted McDonald, Frank Gavin, Jean-Francois Ethier, Brent Diverty, Kimberlyn McGrail, Alan Katz, Juliana Wu

  Published online: Nov 9, 2020

• Thirty-three myths and misconceptions about population data: from data capture and processing to linkage

  Peter Christen, Rainer Schnell

  Published online: Jan 31, 2023

• Towards a standardised cross-sectoral data access agreement template for research: a core set of principles for data access within trusted research environments

  Rachel Brophy, Ester Bellavia, Maeve Groot Bluemink, Katharine Evans, Munisa Hashimi, Yemi Macaulay, Edel McNamara, Allison Noble, Paola Quattroni, Amanda Rudczenko, Andrew D Morris, Cassie Smith, Andy Boyd

  Published online: Oct 9, 2023

• Transparency in the existence, use, and output of a mental health data resource: a descriptive paper from the National Institute for Health and Care Research (NIHR) Maudsley Biomedical Research Centre (BRC) Clinical Record Interactive Search (CRIS) Platform

  Amelia Jewell, Matthew Broadbent, Claire Delaney-Pope, Megan Pritchard, Hannah Woods, Robert Stewart

  Published online: Apr 10, 2025

• UK Longitudinal Linkage Collaboration (UK LLC): The National Trusted Research Environment for Longitudinal Research

  Andy Boyd, Katharine M. Evans, Emma Turner, Robin Flaig, Jacqui Oakley, Kirsteen C. Campbell, Richard Thomas, Stela McLachlan, Matthew Crane, To view the complete list of authors, please see the PDF

  Published online: Feb 17, 2025

• Understanding how to build a social licence for using novel linked datasets for planning and research in Kent, Surrey and Sussex: results of deliberative focus groups.

  Elizabeth Ford, Melanie Rees-Roberts, Kathryn Stanley, Katie Goddard, Sarah Giles, Jo Armes, Deborah Ikhile, Anotida Madzvamuse, Victoria Spencer-Hughes, Abraham George, Chris Farmer, Jackie Cassell

  Published online: Jan 30, 2023

• Unlocking First Nations health information through data linkage

  Jennifer Walker, Evelyn Pyper, Carmen R Jones, Saba Khan, Nelson Chong, Dan Legge, Michael J Schull, David Henry

  Published online: May 22, 2018

• Using data linkage to monitor COVID-19 vaccination

  Development of a vaccination linked data repository

  Tom Eitelhuber, Sera Ngeh, Lauren Bloomfield, Bhaval Chandaria, Paul Effler

  Published online: Dec 15, 2022

• Using the RECORD guidelines to improve transparent reporting of studies based on routinely collected data

  Katie Harron, Eric Benchimol, Sinead Langan

  Published online: Jan 24, 2018

• Validating a novel deterministic privacy-preserving record linkage between administrative & clinical data: applications in stroke research

  Alisia Southwell, Susan E. Bronskill, Tom Gee, Brendan Behan, Susan G. Evans, Tom Mikkelsen, Elizabeth Theriault, Kirk Nylen, Shannon Lefaivre, Nelson Chong, Mahmoud Azimaee, Natasa Tusevljak, Douglas Lee, Richard H. Swartz

  Published online: Nov 23, 2022

• What makes administrative data research-ready?

  A systematic review and thematic analysis of published literature

  Louise Mc Grath-Lone, Matthew A Jay, Ruth Blackburn, Emma Gordon, Ania Zylbersztejn, Linda Wijlaars, Ruth Gilbert

  Published online: Jun 20, 2022