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.

 

• Data Dictionaries: Essential Tools for the Ethical and Transparent Use of Integrated Data

  Rebecca S. Pepe, Kristen Coe

  Published online: Oct 13, 2025

• Data Note: Alternative Name Encodings - Using Jyutping or Pinyin as tonal representations of Chinese names for data linkage

  Joseph Lam, Mario Cortina-Borja, Rob Aldridge, Ruth Blackburn, Katie Harron

  Published online: Mar 11, 2025

• Data resource profile: a nationally representative linked pregnancy cohort in Canada integrating clinical, social, and environmental data

  Sabrina Chiodo, Sonia M. Grandi, Jessica Gronsbell, Laura C. Rosella

  Published online: Mar 9, 2026

• Data resource profile: children looked after administrative records in Wales

  Gemma Allnatt, Alexandra Lee, Jonathan Scourfield, Martin Elliott, Karen Broadhurst, Lucy Griffiths

  Published online: Aug 2, 2022

• Data Resource Profile: COVid VAXines Effects on the Aged (COVVAXAGE)

  Kaleen N. Hayes, Daniel A. Harris, Andrew R. Zullo, Djeneba Audrey Djibo, Renae L. Smith-Ray, Michael S. Taitel, Tanya G. Singh, Cheryl McMahill-Walraven, Preeti Chachlani, Katherine J. Wen, Ellen P. McCarthy, Stefan Gravenstein, Sean McCurdy, Kristina E. Baird, Daniel Moran, Derek Fenson, Yalin Deng, Vincent Mor

  Published online: Oct 18, 2023

• Data Resource Profile: Education and Health Data in New Zealand’s Integrated Data Infrastructure

  Thomas Schober, Nicholas Bowden, Stephanie D'Souza, Sheree Gibb, Barry Milne, Lisa Meehan

  Published online: Apr 23, 2026

• Data Resource Profile: Public Health Scotland (PHS) Homecare Medicines Dataset: A National Resource for Linked Prescribing Data for Specialist Medicines Prescribed in Hospital Outpatient setting and Supplied Via Homecare Services

  Amanj Kurdi, Laura Stobo, Morven Millar, Will Clayton , Andrew Merrick , Stuart McTaggart, Tanja Mueller, Marion Bennie

  Published online: Feb 19, 2026

• Data resource profile: Scottish Linked Pregnancy and Baby Dataset (SLiPBD)

  Laura Lindsay, Kate Mark, Emily Moore, Jade Carruthers, Leanne Hopkins, Denise Jennings, Rachael Wood

  Published online: Jul 18, 2024

• Data Resource Profile: The Age-It Family Demography Survey (Age-It FDS)

  Daniele Vignoli, Elisa Brini, Raffaele Guetto, Giammarco Alderotti, Andrea Ballerini, Marco Cozzani, Alessandro Gallo, Carlos J. Gil-Hernández, Maria Francesca Morabito, Elena Pirani, Davide Soldati, Francesco Tata, Valentina Tocchioni

  Published online: May 13, 2026

• Data resource profile: the Edinburgh Child Protection Dataset - a new linked administrative data source of children referred to Child Protection paediatric services in Edinburgh, Scotland

  Louise Marryat, Jacqueline Stephen, Jacqueline Mok, Sharon Vincent, Charlotte Kirk, Lindsay Logie, John Devaney, Rachael Wood

  Published online: Dec 14, 2023

• Data Resource Profile: The Life and health After Childhood cancEr (LACE) project

  Heather J Baldwin, Sarah Pont, Anne Currell, Laura Newey, Danny R Youlden, Natalie Bradford, Peter D Baade, Joanne F Aitkin, Jason D Pole, Natasha Nassar

  Published online: Feb 2, 2026

• Data Resource Profile: The Mental Health of Children and Young People (MHCYP) 2017 and follow-up surveys

  Mohammad Karimipour, Harry Barker, Tamsin Newlove-Delgado , Johhny Downs, Sally McManus, Franziska Marcheselli, Jessica Penhallow, Lauren Cross, Aslihan Baser, Frances Mathews, Clara Faria, Tamsin Ford

  Published online: Feb 26, 2026

• De-identification of Free Text Data containing Personal Health Information: A Scoping Review of Reviews

  Bekelu Negash, Alan Katz, Christine J. Neilson, Moniruzzaman Moni, Marcello Nesca, Alexander Singer, Jennifer E. Enns

  Published online: Dec 12, 2023

• Developing a comprehensive database with sensitive health information: A profile of people living with HIV in Newfoundland and Labrador, Canada

  Shabnam Asghari, Sarah Boyd, John Knight, Jillian Blackmore, Oliver Hurley, Jill Allison, Laura Gilbert, Jeff Dowden, Phil Lundrigan

  Published online: Feb 25, 2020

• Developing a linked electronic health record derived data platform to support research into healthy ageing

  Nadine Andrew, Richard Beare, Tanya Ravipati, Emily Parker, David Snowdon, Kim Naude, Velandai Srikanth

  Published online: Jun 12, 2023

• Development and implementation of a national online application system for cross-jurisdictional linked data

  Natalie Wray, Kate Miller, Katie Irvine, Elizabeth Moore, Alice Crisp, Kathleen Bapaume, Catherine Taylor, Rob Smetak, Nadine Wiggins, Mikhalina Dombrovskaya, Felicity Flack

  Published online: Apr 27, 2022

• Discovering linked data collections through a new national metadata platform

  Kate M. Miller, Felicity S. Flack, Merran B. Smith, Carina Ecremen Marshall, Vicki Bennett

  Published online: Apr 30, 2025

• Discussing Data: A UK-wide public consultation on the use of low fidelity synthetic data for research

  Claire Nollett, Fiona Lugg-Widger, Joshua Stock, Lucy Brookes-Howell, Jim Fitzgibbon, Sean Johnson, Kim Munnery, Michael Robling, Farheen Yameen, Rob Trubey

  Published online: Nov 27, 2025

• DLforum – A multidisciplinary online discussion forum for data linkage researchers and practitioners

  https://dmm.anu.edu.au/DLforum/

  Peter Christen, Thilina Ranbaduge, Dinusha Vatsalan

  Published online: Feb 20, 2018

• E-Research Institutional Cloud Architecture (ERICA): An Orchestration Meta-Framework for Establishing Trusted Research Environments Using Public Cloud Computing

  Timothy R Churches, Richard Green, Phi Bang Nguyen, Md Shajedur Rahman Shawon, Louisa R Jorm

  Published online: May 20, 2026

• Essential Requirements for Establishing and Operating Data Trusts

  Practical Guidance Based on A Working Meeting of Fifteen Canadian Organizations and Initiatives

  P Alison Paprica, Carl Virtanen, Adrian Thorogood, Michael J. Schull, Alex Ryan, Kimberlyn M. McGrail, Chris Loken, Brian Courtney, Monique Crichlow, Rosario G. Cartagena, Michael Brudno, Andrea Smith, Eric Sutherland, Kathleen Yang

  Published online: Aug 24, 2020

• Essential requirements for the governance and management of data trusts, data repositories, and other data collaborations

  P Alison Paprica, Monique Crichlow, Donna Curtis Maillet, Sarah Kesselring, Conrad Pow, Thomas P. Scarnecchia, Michael J Schull, Rosario G. Cartagena , Annabelle Cumyn, Salman Dostmohammad, Keith O. Elliston, Michelle Greiver, Amy Hawn Nelson, Sean L. Hill, Wanrudee Isaranuwatchai, Evgueni Loukipoudis, James Ted McDonald, John R. McLaughlin, Alan Rabinowitz, Fahad Razak, Stefaan G. Verhulst, Amol A. Verma, J. Charles Victor, Andrew Young, Joanna Yu, Kimberlyn McGrail

  Published online: Sep 20, 2023

• Establishing a national linked database for Fetal Alcohol Spectrum Disorder (FASD) in the UK: multi-method public and professional involvement to determine acceptability and feasibility

  Sarah K. Harding, Beverley Samways, Amy Dillon, Sandra Butcher, Andy Boyd, Raja Mukherjee, Penny A. Cook, Cheryl McQuire

  Published online: Sep 19, 2024

• Evaluation of approximate comparison methods on Bloom filters for probabilistic linkage

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

  Published online: May 23, 2019

• Evaluation of the ASSIGN open-source deterministic address-matching algorithm for allocating Unique Property Reference Numbers to general practitioner-recorded patient addresses

  Gill Harper, David Stables, Paul Simon, Zaheer Ahmed, Kelvin Smith, John Robson, Carol Dezateux

  Published online: Dec 8, 2021