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.

 

• 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 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