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.

 

• 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 Longitudinal Cohort Study of Participation in the Boys & Girls Clubs of Winnipeg

  Jennifer Enns, Nathan C. Nickel, Dan Chateau, Alan Katz, Joykrishna Sarkar, Drew Lambert, Marni Brownell

  Published online: Jun 9, 2022

• A maternal and child health administrative cohort in Scotland: the utility of linked administrative data for understanding early years' outcomes and inequalities

  Paul Henery, Ruth Dundas, Srinivasa Vittal Katikireddi , Alastair H Leyland, Lynda Fenton, Sonya Scott, Claire Cameron, Anna Pearce

  Published online: Nov 27, 2024

• A more accurate approach to define abortion cohorts using linked administrative data: an application to Ontario, Canada

  Laura Schummers, Kimberlyn McGrail, Elizabeth K Darling, Sheila Dunn, Anastasia Gayowsky, Janusz Kaczorowski, Wendy V. Norman

  Published online: Apr 29, 2022

• A population level study into health vulnerabilities of mothers and fathers involved in public law care proceedings in Wales, UK between 2011 and 2019

  Rhodri David Johnson, Dr Laura North, Dr Bachar Alrouh, Professor Ann John, Professor Kerina A Jones, Ashley Akbari, Jon Smart, Simon Thompson, Dr Claire Hargreaves, Dr Stefanie Doebler, Dr Linda Cusworth, Professor Karen Broadhurst, Professor David V Ford, Dr Lucy J Griffiths

  Published online: Apr 6, 2022

• 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

• A statewide system for maternal-infant linked longitudinal surveillance: Indiana's model for improving maternal and child health

  Jill Inderstrodt, Daniel P. Riggins, Acatia Greenwell, John P. Price, Jennifer L. Williams, Eden Bezy, Allison Forkner, Elizabeth Bowman, Summer D. Miller, Titus K.L. Schleyer, Shaun J. Grannis, Brian E. Dixon

  Published online: Nov 11, 2024

• 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

• Advancing cross-sectoral data linkage to understand and address the health impacts of social exclusion: Challenges and potential solutions

  Ms Lindsay A. Pearce, Associate Professor Rohan Borschmann, Dr Jesse T. Young, Professor Stuart A. Kinner

  Published online: Jun 7, 2023

• Assistive technology access in longitudinal datasets: a global review

  Jamie Danemayer, Sophie Mitra, Cathy Holloway, Shereen Hussein

  Published online: Mar 16, 2023

• Benefits of not smoking during pregnancy for non-Aboriginal women and their babies in New South Wales, Australia: a record linkage study

  Jillian A Patterson, Aaron Cashmore, Sally Ioannides, Andrew J Milat, Tanya A Nippita, Jonathan M Morris, Siranda Torvaldsen

  Published online: Dec 14, 2021

• Can administrative data be used to research health visiting in England? A completeness assessment of the Community Services Dataset

  Amanda Clery, Catherine Bunting, Mengyun Liu, Katie Harron, Jenny Woodman, Louise Mc Grath-Lone

  Published online: Jun 20, 2024

• 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

• The Children’s Data Network

  Harnessing the Scientific Potential of Linked, Administrative Data to Inform Children’s Programs and Policies

  Regan Foust, Jonathan Hoonhout, Andrea Eastman, John Prindle, Rebecca Rebbe, Huy Nghiem, Himal Suthar, Stephanie Cuccaro-Alamin, Michael Mitchell, William Dawson, Lindsey Palmer, Siddharth Raj, Eunhye Ahn, Ivy Hammond, Claire McNellan, Julia Reddy, Wan-Ting Chen, Kamilah Mayfield, Emily Putnam-Hornstein, Jacquelyn McCroskey

  Published online: Mar 23, 2022

• Chronic Disease Surveillance in Alberta’s Tomorrow Project using Administrative Health Data

  Ming Ye, Jennifer Vena, Jeffrey Johnson, Grace Shen-Tu, Dean Eurich

  Published online: Oct 21, 2021

• CIDACS' efforts towards an inclusive and dialogic data governance in Brazil: a focused literature review

  Bethania de Araujo Almeida, Roberto P. Carreiro, Maíra L. de Souza, Mauricio L. Barreto

  Published online: Mar 13, 2024

• Citizen Health Science

  Theodore Adrien Walls, Shannon Forkus, Abbigayle Coria

  Published online: Sep 26, 2019

• Closing the loop: From system-based data to evidence-influenced policy and practice

  Dr. Alan Katz, Dr. Marni Brownell, Dr. Jennifer E. Enns, Dr. Nathan C. Nickel

  Published online: Jan 25, 2022

• Co-resident grandparent and maternal employment. A Northern Ireland cross-sectional administrative data analysis

  Ana Corina Miller, Dermot O'Reilly, David Wright

  Published online: Oct 9, 2024

• Cohort profile: A population-based record linkage platform to address critical epidemiological evidence gaps in respiratory syncytial virus and other respiratory infections

  Minda Sarna, Belaynew Taye, Huong Le, Fiona Giannini, Kathryn Glass, Christopher C Blyth, Peter Richmond, Rebecca Glauert, Avram Levy, Hannah C Moore

  Published online: Apr 11, 2024

• Cohort profile: working age adults accessing secondary mental health services in South London (UK) and benefits – a data linkage of electronic mental health records and benefits data.

  Ava Phillips, Ray Leal , Amelia Jewell , Ira Madan, Johnny Downs, Matthew Broadbent, Matthew Hotopf, Sarah Dorrington, Nicola T. Fear, Sharon A.M. Stevelink

  Published online: May 23, 2024

• Community Priority setting for Fetal Alcohol Spectrum Disorder Research in Australia

  Amy Finlay-Jones, Elizabeth J Elliott, Diane Mayers, Helen Gailes, Paula Sargent, Neil Reynolds, Bridgette Birda, Lisa Cannon, Tracy Reibel, Anne McKenzie, Heather Jones, Narelle Mullan, Tracey W Tsang, Martyn Symons, Carol Bower

  Published online: Dec 10, 2020

• Consensus Statement on Public Involvement and Engagement with Data-Intensive Health Research

  Mhairi Aitken, Mary P Tully, Carol Porteous, Simon Denegri, Sarah Cunningham-Burley, Natalie Banner, Corri Black, Michael Burgess, Lynsey Cross, Johannes van Delden, Elizabeth Ford, Sarah Fox, Natalie Fitzpatrick, Kay Gallacher, Catharine Goddard, Lamiece Hassan, Ron Jamieson, Kerina H Jones, Minna Kaarakainen, Fiona Lugg-Widger, Kimberlyn McGrail, Anne McKenzie, Rosalyn Moran, Madeleine J Murtagh, Malcolm Oswald, Alison Paprica, Nicola Perrin, Emma Victoria Richards, John Rouse, Joanne Webb, Donald J Willison

  Published online: Dec 10, 2020

• Correlates of child mental health and substance use related emergency department visits in Ontario: A linked population survey and administrative health data study

  Jinette Comeau, Li Wang, Laura Duncan, Jordan Edwards, Katholiki Georgiades, Kelly K. Anderson, Piotr Wilk, Tammy Lau

  Published online: Aug 14, 2023

• Counting Households Containing Same-Sex Couples: An Inclusive Approach

  Peter Brandon, Oleg Ivashchenko

  Published online: Oct 12, 2022

• 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 linkage can reduce the burden and increase the opportunities in the implementation of Value-Based Health Care policy: a study in patients with ulcerative colitis (PROUD-UC Study)

  John David Walshe, Ashley Akbari, Dr Barney Hawthorne, Hamish Laing

  Published online: Nov 24, 2022

• 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: ECHILD only-children and siblings (ECHILD-oCSib): a national cohort of linked health, education and social care data on mothers and children in England

  Qi Feng, Georgina Ireland, Ruth Gilbert, Katie Harron

  Published online: Jun 6, 2024

• Data resource profile: Exploring freely accessible data describing wider determinants of health in England

  Steve Childs, Chris Farmer, Abraham George, Elizabeth Ford, Melanie Rees-Roberts

  Published online: Oct 2, 2024

• Data Resource Profile: Nutrition Data in the VA Million Veteran Program

  Xuan-Mai T. Nguyen, Luc Djousse, Michael Gaziano, Kelly Cho, Frank B. Hu, Walter C. Willett, Stacey B. Whitbourne, Kerry Ivey, Yanping Li, and on behalf of the VA Million Veteran Program

  Published online: Mar 7, 2024

• 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 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

• 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

• 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