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 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 SAIL Databank on the UK Secure Research Platform

  Kerina H Jones, David Vincent Ford, Simon Thompson, Ronan Lyons

  Published online: Oct 19, 2020

• 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

• 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

• 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

• 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

• 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

• 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: 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

• 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

• 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

• 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 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

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

  Amy L Hawn Nelson, Sharon Zanti

  Published online: Sep 30, 2020

• 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

• 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

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

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

• 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

• 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

• 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

• 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 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

• 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

• 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

• 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