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.

 

• Indigenizing our Research

  Indigenous Community Leadership in HIV Epidemiology Research

  Valerie Nicholson, Andreea Bratu, Alison R McClean, Simran Jawanda, Niloufar Aran, Knighton Hillstrom, Evelyn Hennie, Claudette Cardinal, Elizabeth Benson, Kerrigan Beaver, Anita C Benoit, Bob Hogg, Denise Jaworsky, Building More Bridges Research Team

  Published online: May 20, 2021

• Individual, household structure, and socioeconomic predictors of COVID-19 testing and vaccination outcomes: a whole population linked data analysis

  Nicole Satherley, Andrew Sporle

  Published online: May 27, 2025

• Influencing policy and practice is work in progress

  Elizabeth Nelson, Dermot O'Reilly

  Published online: Feb 3, 2022

• INTEGRATE: A methodology to facilitate critical care research using multiple, linked electronic health records at population scale.

  Rowena Griffiths, Laura Herbert, Ashley Akbari, Rowena Bailey, Joe Hollinghurst, Richard Pugh, Tamas Szakmany, Fatemeh Torabi, Ronan A Lyons

  Published online: Jul 18, 2022

• 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

• Involving service users in Births and their outcomes: a retrospective birth cohort data linkage study analysing daily, weekly and yearly cycles and their implications for the NHS

  Mary Newburn, Miranda Scanlon, Rachel Plachcinski, Alison Jill Macfarlane

  Published online: Nov 2, 2020

• It takes a village: Influencing policy and practice to prevent alcohol use in pregnancy and promote better outcomes for individuals living with Fetal Alcohol Spectrum Disorder

  Amy Finlay-Jones, Elizabeth Elliott, Astrid Chapman, Jane Halliday, Heather Jones, Natalie Kippin, Narelle Mullan, Hayley Passmore, Tracy Reibel, Neil Reynolds, Martyn Symons, Tracey W Tsang, Rochelle Watkins, Carol Bower

  Published online: Mar 2, 2022

• 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

• 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

• Length of Stay in ICU of Covid-19 Patients in England, March - May 2020

  Nick Shryane, Maria Pampaka, Andrea Lisette Aparicio Castro, Shazaad Ahmad, Mark Elliot, Ji Hye Kim, Jennifer Murphy, Diego Andres Perez Ruiz, Wendy Olsen, Arkadiusz Wiśniowski

  Published online: Mar 3, 2021

• Leveraging census data to design and implement an area-based deprivation index to assess health inequalities in Ecuador

  Diego Andrade Ortiz, Ruth Dundas, Jonathan R Olsen, Irina Chis Ster, and on behalf of the SEDHI project

  Published online: Jan 26, 2026

• 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

• Linking migration and hospital data in England: linkage process and evaluation of bias

  Rachel Burns, Sacha Wyke, Yamina Boukari, Sirinivasa Vittal Katikireddi, Dominik Zenner, Ines Campos-Matos, Katie Harron, Robert Aldridge

  Published online: Feb 12, 2024

• 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 Different Versions of the International Classification of Diseases: A Scoping Review

  Nasiba M. Ahmed, Mina Nouredanesh, Lisa M. Lix, Amani F. Hamad

  Published online: Mar 12, 2026

• 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

• Mothers Seeking Sanctuary in Wales: a Cohort Profile

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

  Published online: Jun 3, 2026

• 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

• Preventive Care Uptake and Long-Term Healthcare Use Among Children with Fetal Opioid Exposure in Ontario, Canada: A Population-Based Retrospective Cohort Study

  Arum Han, Gabrielle Pratt Tremblay, Michael Pugliese, Deshayne B Fell, Daniel J Corsi

  Published online: Jun 2, 2026

• 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

• Putting Voluntary, Charity, and Social Enterprise (VCSE) Organisations at the Heart of Research: Creating a Northern Ireland VCSE Research Directory

  Eric Spikol, Enya Redican, Orla McBride, Jamie Murphy, Mark Shevlin

  Published online: May 14, 2026

• 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

• Residential mobility and receipt of measles, mumps and rubella vaccination: analysis of linked primary care electronic health records in a London region

  Nicola Firman, Laura North, Milena Marszalek, Marta Wilk, Ana Gutierrez, Rhodri Johnson, Carol Dezateux

  Published online: Mar 25, 2026

• 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