Data use for positive impact on individuals and populations

This is all about how data is being used to improve lives and make positive change for public good. It also encompasses the science and practice of public engagement.

 

• Linking pre- and post-adoption records for research in anonymised form in a data safe haven:

  legal implications and support for a social licence

  Kerina Jones, Sharon Heys, Rachel Thompson, Lucy Griffiths, Rhodri Johnson, Alex Lee, David Ford, Karen Broadhurst

  Published online: Oct 23, 2020

• Linking primary care data from Clinical Practice Research Datalink to secondary care and other health-related patient data: update and implications

  Justin Edward Chan, Rhys Barnett, Susan Hodgson, Prinal Chohan, Giulia Mantovani, Jennifer Campbell

  Published online: Jan 19, 2026

• Local area variation in health visiting contacts across England for children under age 5: a cross-sectional analysis of administrative data in England 2018-2020

  Mengyun Liu, Jenny Woodman, Louise Mc Grath-Lone, Amanda Clery, Catherine Bunting, Samantha Bennett, Sally Kendall, Jennifer Kirman, Helen Weatherly, Jane Barlow, Helen Bedford, Katie Harron

  Published online: May 13, 2024

• Making the most of cybercrime and fraud crime report data: a case study of UK Action Fraud

  Sara Giro Correia

  Published online: May 11, 2022

• Mapping Population Vulnerability and Community Support during COVID-19

  a case study from Wales

  Nina H Di Cara, Jiao Song, Valerio Maggio, Christopher Moreno-Stokoe, Alastair R Tanner, Benjamin Woolf, Oliver S P Davis, Alisha Davies

  Published online: Apr 19, 2021

• Material deprivation in the UK: beyond the binary

  Ana Maria Nicoriciu, Mark James Elliot

  Published online: Nov 3, 2025

• Maternal disability and newborn discharge to social services: a population-based study

  Claire Grant, Yona Lunsky, Astrid Guttmann, Simone N. Vigod, Isobel Sharpe, Kinwah Fung, Hilary K. Brown

  Published online: Jul 4, 2024

• Maternity care experiences and outcomes of people seeking sanctuary in Wales: a data linkage study protocol

  Alix Bukkfalvi-Cadotte, Ashra Khanom, Amy Brown, Helen Snooks

  Published online: Sep 11, 2024

• Measuring serious violence perpetration: comparison of police-recorded and self-reported data in a UK cohort

  Rosaleen P. Cornish, Alison Teyhan, Kate Tilling, John Macleod, Iain Brennan

  Published online: Feb 4, 2025

• Medication use from conception to the first antenatal appointment: agreement between maternal self-report to midwife and prescribing records in Northern Ireland in 2011-2016

  Joanne Given, Helen Dolk, Alison Little, Maria Loane

  Published online: Nov 24, 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

• Network analysis as a tool to illustrate the population-level complex prescribing to community-dwelling people living with dementia

  Abby Emdin, Therese A Stukel, Jennifer Bethell, Andrea Iaboni, Susan Bronskill

  Published online: Feb 11, 2026

• 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

• Notches on the dial: a call to action to develop plain language communication with the public about users and uses of health data

  P Alison Paprica, Kimberlyn McGrail, Michael J Schull

  Published online: Aug 5, 2019

• 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

• 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 population level study of SARS-CoV-2 prevalence amongst people experiencing homelessness in Wales, UK

  Ian Thomas, Peter Mackie

  Published online: Dec 2, 2021

• 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

• Public engagement can change your research, but how can it change your research institution? ICES Case Study

  Jenine Paul, Randy Davidson, Cheryl Johnstone, Margaret Loong, John Matecsa, Astrid Guttmann, Michael J Schull

  Published online: Sep 30, 2020

• Public Involvement & Engagement in health inequalities research on COVID-19 pandemic: a case study of CIDACS/FIOCRUZ BAHIA

  Adalton dos Anjos Fonseca, Denise Moraes Pimenta, Mariana Rodrigues Sebastião de Almeida, Raiza Tourinho Lima, Mauricio Lima Barreto, Maria Yury Travassos Ichihara

  Published online: Jun 6, 2023

• Public Involvement & Engagement in the work of a data safe haven:

  a case study of the SAIL Databank

  Kerina Jones; Sharon Heys, Rachel Thompson, Lynsey Cross, David Ford

  Published online: Aug 24, 2020

• Public involvement and engagement in primary and emergency care research

  the story from PRIME Centre Wales

  Bridie Angela Evans, Carolyn Wallace, Helen Snooks, Martin Rolph, Mary Nettle, Natalie Joseph-Williams, Sian Jones, Mari James, Robert Harris-Mayes, Lesley Griffiths, John Gallanders, Adrian Edwards

  Published online: Sep 30, 2020

• Public Preferences regarding Data Linkage for Health Research: A Discrete Choice Experiment

  Mhairi Aitken, Gareth McAteer, Sara Davidson, Clive Frostick, Sarah Cunningham-Burley

  Published online: Jun 26, 2018

• Public sector health analytics capacity before and after Covid-19: A case study of manager perspectives in New Brunswick, Canada

  James Ayles, Maria do Carmo Correia de Lima, Neeru Gupta

  Published online: Jul 22, 2024

• 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

• Secondary use of routinely collected administrative health data for epidemiologic research: Answering research questions using data collected for a different purpose

  Scott D. Emerson, Taylor McLinden, Paul Sereda, Amanda M. Yonkman, Jason Trigg, Sandra Peterson, Robert S. Hogg, Kate A. Salters, Viviane D. Lima, Rolando Barrios

  Published online: Nov 19, 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

• Semantically Interoperable Census Data: Unlocking the Semantics of Census Data Using Ontologies and Linked Data

  Anderson Wong, Mark Fox, Megan Katsumi

  Published online: May 20, 2024

• 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

• Sharing data to better understand one of the world's most significant shared experiences: data resource profile of the longitudinal COVID-19 psychological research consortium (C19PRC) study

  Orla McBride, Sarah Butter, Todd Hartman, Jamie Murphy, Philip Hyland, Mark Shevlin, Jilly Gibson-Miller, Liat Levita, Liam Mason, Anton Martinez, Ryan McKay, Alex Lloyd, Thomas Stocks, Kate Bennett, Frédérique Vallières, Thanos Karatzias, Carmen Valiente, Carmelo Vazquez, Alba Contreras Cuevas, Marco Bertamini, Anna Panzeri, Giovanni Bruno, Richard Bentall

  Published online: Feb 17, 2022

• Sharing linked data sets for research: results from a deliberative public engagement event in British Columbia, Canada

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

  Published online: May 7, 2019

• Spatio-temporal forecasting of COVID-19 cases in the Netherlands for source and contact tracing

  Max Keuken, Jizzo R. Bosdriesz, Anders Boyd, Elisabeth M. den Boogert, Ivo K. Joore, Nicole H.T.M. Dukers – Muijrers, Gini van Rijckevorsel, Hannelore M. Götz, Irene E. Goverse, Mariska W.F. Petrignani, Stijn F.H. Raven, Susan van den Hof, Kirsten V.C. Wevers-de Boer, Maarten F. Schim van der Loeff, Amy Matser

  Published online: May 7, 2025

• Student Achievement Trajectories in Ontario: Creating and validating a province-wide, multi-cohort and longitudinal database

  Jeanne Sinclair, Scott Davies, Magdalena Janus

  Published online: Feb 2, 2023

• 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

• Supporting policy and practice in Ontario through ICES’ Applied Health Research Question (AHRQ) Program

  Lisa Ishiguro, Diana Ann An, Lesley Plumptre, Jenine Paul, Graham Mecredy, Kathy Li, Minnie Ho, Susan E. Bronskill, J. Charles Victor, Michael J. Schull, J. Michael Paterson

  Published online: Oct 28, 2021

• 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 application of population data linkage to capture sibling health outcomes among children and young adults with neurodevelopmental conditions. A scoping review

  Caitlin Gray, Helen Leonard, Matthew N. Cooper, Dheeraj Rai, Emma J. Glasson

  Published online: Mar 18, 2025

• 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 changing face of Australian data reforms: Impact on pharmacoepidemiology research

  Juliana de Oliveira Costa, Claudia Bruno, Andrea L Schaffer, Smriti Raichand, Emily A Karanges , Sallie-Anne Pearson

  Published online: Apr 15, 2021

• The impact of cross-jurisdictional patient flows on ascertainment of hospitalisations and cardiac procedures for ST-segment-elevation myocardial infarction in an Australian population.

  Branislav Igic, Rachel Farber, Maria Alfaro-Ramirez, Michael A Nelson , Lee K Taylor

  Published online: Feb 8, 2023

• The intergenerational health, social care, and justice system contacts associated with household substance misuse in Wales

  Hywel T Evans, Ian W Farr, Grace A Bailey, Gareth I Davies, Josh Dixon, Sam Fallick, Joanne Maimaris, Columbus Ohaeri, Olabambo Oluwasuji, Ryan Phillips, Matthew Skermer, Delyth James, Josie Smith

  Published online: Jan 14, 2026

• The International Population Data Linkage Network – Banff and Beyond

  William A Ghali, Michael J Schull

  Published online: Aug 28, 2018

• The Medicines Intelligence Centre of Research Excellence: Co-creating real-world evidence to support the evidentiary needs of Australian regulators and payers.

  Nicole Pratt, Ximena Camacho, Claire Vajdic, Louisa Degenhardt, Tracey-Lea Laba, Jodie Hillen, Christopher Etherton-Beer , David Preen, Louisa Jorm, Natasha Donnolley, Alys Havard, Sallie-Ann Pearson

  Published online: Jun 13, 2022