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 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

• 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

• 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

• 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

• 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 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

• 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 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

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

  Amy L Hawn Nelson, Sharon Zanti

  Published online: Sep 30, 2020

• 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 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

• 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

• 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

• 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

• 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 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

• 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

• 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

• 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 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 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 International Population Data Linkage Network – Banff and Beyond

  William A Ghali, Michael J Schull

  Published online: Aug 28, 2018

• The Population Health Research Network - Population Data Centre Profile

  Felicity Flack, Merran Smith

  Published online: Nov 20, 2019

• The Research Data Centre of the German Federal Employment Agency at the Institute for Employment Research (RDC-IAB)

  Linked Microdata for Labour Market Research

  Manfred Antoni, Alexandra Schmucker

  Published online: Nov 20, 2019

• Trust, security and public interest: Striking the balance

  A review of previous literature on public attitudes towards the sharing, linking and use of administrative data for research

  Elizabeth Waind

  Published online: Dec 11, 2020