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.

 

• Data resource profile: the ORIGINS project databank: a collaborative data resource for investigating the developmental origins of health and disease

  Belinda C. Davey, Wesley Billingham, Jacqueline A. Davis, Lisa Gibson, Nina D'Vaz, Susan L. Prescott, Desiree T. Silva, Sarah Whalan

  Published online: Sep 30, 2024

• Data Resource Profile: The Social Services Client Administration and Retrieval Environment (SOSCARE) administrative dataset for children’s social care in Northern Ireland

  Sarah McKenna, Siobhán Murphy, Dermot O’Reilly, Lisa Bunting, Aideen Maguire

  Published online: Dec 3, 2025

• Data Resource Profile: the Virtual International Care Homes Trials Archive (VICHTA)

  Lisa Irvine, Jenni Burton, Myzoon Ali, Jo Booth, James Desborough, Pip Logan, Esme Moniz-Cook, Claire Surr, David Wright, Claire Goodman

  Published online: Jan 15, 2024

• Data Resource: Children Receiving Care and Support and Children in Need, administrative records in Wales.

  Alexandra Lee, Martin Elliott, Jonathan Scourfield, Stuart Bedston, Karen Broadhurst, David Ford, Lucy Griffiths

  Published online: May 9, 2022

• Data Resource: Vascular Risk in Adult New Zealanders (VARIANZ) datasets

  Suneela Mehta, Rod Jackson, Daniel J Exeter, Billy P Wu, Sue Wells, Andrew J Kerr

  Published online: Sep 2, 2019

• Defining a low-risk birth cohort: a cohort study comparing two perinatal data sets in Ontario, Canada

  Elizabeth Darling, Olivia Marquez, Alison Park

  Published online: Mar 18, 2024

• Describing a complex primary health care population to support future decision support initiatives

  Jacqueline K Kueper, Jennifer Rayner, Merrick Zwarenstein, Daniel J Lizotte

  Published online: Oct 24, 2022

• Describing the geographical linkage between the UK Millennium Cohort Study and crime incidents in England and Wales

  Nicolas Libuy, Emla Fitzsimons, David Church

  Published online: Apr 25, 2024

• Determining households from patient addresses and unique property reference numbers in general practitioner electronic health records

  Gillian Harper, Nicola Firman, Marta Wilk, Milena Marszalek, Paul Simon, David Stables, Rich Fry, Kelvin Smith, Carol Dezateux

  Published online: Apr 9, 2024

• Developing a Data Integrated COVID-19 Tracking System for Decision-Making and Public Use

  Alexander Krusina, Oscar Chen, Lucia Otero Varela, Chelsea Doktorchik, Vince Avati, Søren Knudsen, Danielle Southern, Cathy Eastwood, Nishan Sharma, Tyler Williamson

  Published online: Sep 28, 2020

• Developing a population data science approach to assess increased risk of COVID-19 associated with attending large events

  Mark Drakesmith, Gemma Hobson, Gareth John, Emily Steggall, Ashley Gould, John Parkinson, Daniel Rhys Thomas

  Published online: Aug 3, 2022

• Developing and evaluating a model of public involvement and engagement embedded in a national longitudinal study: HealthWise Wales

  Julia Townson, Jan Davies, Lisa Hurt, Dr, Pauline Ashfield-Watt, Dr, Shantini Paranjothy, Professor

  Published online: Apr 16, 2021

• Development and Validation of a Mortality Risk Prediction Index Score for Adults Living with HIV and Multiple Chronic Comorbidities

  Viviane D. Lima, Bronhilda T. Takeh, Neil Faught , Hasan Nathani , Jielin Zhu , Scott Emerson , Katerina Dolguikh , Jason Trigg , Kate A. Salters, Rolando Barrios , Julio S. G. Montaner

  Published online: Jun 10, 2025

• Developmental Impacts of the COVID-19 Pandemic on Young Children: A Conceptual Model for Research with Integrated Administrative Data Systems

  Heather L. Rouse, Rebecca J. Bulotsky Shearer, Sydney S. Idzikowski, Amy Hawn Nelson, Mark Needle, Matthew F. Katz , Jhonelle Bailey, Justin T. Lane, Emily Berkowitz, Sharon Zanti, Astrid Pena , Maggie Reeves

  Published online: Oct 7, 2021

• 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

• Early child development in England: Cross-sectional analysis of ASQ®-3 records from the 2-2½-year universal health visiting review using national administrative data (Community Service Dataset, CSDS)

  Jayu Jung, Sarah Cattan, Claire Powell, Jane Barlow, Mengyun Liu, Amanda Clery, Louise Mc Grath-Lone, Catherine Bunting, Jenny Woodman

  Published online: Feb 27, 2025

• 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

• Establishment of a birth-to-education cohort of 1 million Palestinian refugees using electronic medical records and electronic education records

  Zeina Jamaluddine, Akihiro Seita, Ghada Ballout, Husam Al-Fudoli, Gloria Paolucci, Shatha Albaik, Rami Ibrahim, Miho Sato, Hala Ghattas, Oona Campbell

  Published online: Oct 24, 2023

• Estimating surge in COVID-19 cases, hospital resources and PPE demand with the interactive and locally-informed COVID-19 Health System Capacity Planning Tool

  Olga Krylova, Omar Kazmi, Hui Wang, Kelvin Lim, Chloe Logar-Henderson, Katerina Gapanenko

  Published online: Apr 6, 2022

• Evaluating the “right@home” randomised trial of nurse home visiting using linked administrative data at school transition

  Anna Price, Jiaxin Zhang, Sharon Goldfeld, John Carlin, Fiona Mensah

  Published online: May 16, 2024

• Evaluating the accuracy of data extracted from electronic health records into MedicineInsight, a national Australian general practice database

  Benjamin Daniels, Alys Havard, Rimma Myton, Cynthia Lee, Kendal Chidwick

  Published online: Jun 29, 2022

• 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

• Four Questions to Guide Decision-Making for Data Sharing and Integration

  Amy Hawn Nelson, Sharon Zanti

  Published online: Oct 4, 2023

• A Framework for Centering Racial Equity Throughout the Administrative Data Life Cycle

  Amy L Hawn Nelson, Sharon Zanti

  Published online: Sep 30, 2020

• Health data social licence: An inclusive process to learn more about the perspectives of experienced public and patient advisors

  Julia Burt, Annabelle Cumyn, Roxanne Dault, Louise Belzile, Louise Binder, Cris Carter, Paul Carter, Brian Cho, Clara Dallaire, André Gaudreau, Frédéric L'Hérault, Annette McKinnon, Danièle Remy, Leah Stephenson, Cindy Yip, P Alison Paprica

  Published online: Apr 17, 2024

• How to analyze and link patient experience surveys with administrative data to drive health service improvement -- examples from Alberta, Canada

  Kyle Kemp, Paul Fairie, Brian Steele, Maria Santana

  Published online: Oct 13, 2022

• I-SIRch: AI-powered concept annotation tool for equitable extraction and analysis of safety insights from maternity investigations

  Mohit Kumar Singh, Georgina Cosma, Patrick Waterson, Jonathan Back, Gyuchan Thomas Jun

  Published online: Nov 20, 2024

• 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

• Identification of International Society on Thrombosis and Haemostasis major and clinically relevant non-major bleed events from electronic health records: a novel algorithm to enhance data utilisation from real-world sources

  Alexander Hartenstein, Khaled Abdelgawwad, Frank Kleinjung, Stephen Privitera, Thomas Viethen, Tatsiana Vaitsiakhovich

  Published online: Oct 2, 2023

• Impact of COVID-19 pandemic on community medication dispensing: a national cohort analysis in Wales, UK

  Fatemeh Torabi, Julian Halcox, Andrew Morris, Neil Jenkins, Daniel Harris, Rowena Griffiths, Gareth Davies, Mike Gravenor, Hoda Abbasizanjani, Stuart Bedston, Jane Lyons, Laura North, Ashley Akbari, Ronan A Lyons

  Published online: Apr 28, 2022

• Impact through Engagement

  Co-production of administrative data research and the approach of the Administrative Data Research Centre Northern Ireland.

  Elizabeth Nelson, Frances Burns

  Published online: Nov 10, 2020

• Improving opportunities for data linkage within Children Looked After administrative records in Wales

  Grace A. Bailey, Alex Lee, Saira Ahmed, Ieuan Scanlon, Laura E. Cowley, Amy Stuart, Ian Farr, Caroline Brooks, Laura North, Lucy J. Griffiths

  Published online: Feb 19, 2025

• 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

• 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

• 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