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

• 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

• 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

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

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

  Published online: Nov 20, 2019

• 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

• 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

• 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

• 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

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

  Published online: Nov 20, 2019

• 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: 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 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

• 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

• 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

• Essential Requirements for Establishing and Operating Data Trusts

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

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

• 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

• Exploring how to improve the involvement of Polish and South Asian communities around big data research. A qualitative study using COM-B model

  Piotr Teodorowski, Sarah E. Rodgers, Kate Fleming, Naheed Tahir, Saiqa Ahmed, Lucy Frith

  Published online: Jul 13, 2023

• 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

• 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 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

• 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

• 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