scholarly journals The International Population Data Linkage Network – Banff and Beyond

2018 ◽  
Vol 3 (4) ◽  
Author(s):  
William A Ghali ◽  
Michael J Schull
Keyword(s):  
Executive Committee ◽  
Data Science ◽  
Data Linkage ◽  
South Australia ◽  
Population Data ◽  
Governance Structure ◽  
Social Program ◽  
Research Network ◽  
Foundational Work ◽  
Poster Presentations

We write to you, here in the pages of the International Journal of Population Data Science, for the second time in our capacity of co-directors of the International Population Data Linkage Network (IPDLN – www.ipdln.org). Time has certainly passed quickly since our first communication, where we introduced ourselves, and discussed planned initiatives for our tenure as leads of the IPDLN. Our network’s scientific community is steadily growing and thriving in an era of heightened interest around all things ‘data’. Indeed, there is great enthusiasm for all initiatives that explore ways of harnessing information systems and multisource data to enhance collective knowledge of health matters so that better decisions can be made by governments, system planners, providers, and patients. Never before have such initiatives attracted more attention. It is in this context of heightened interest and relevance around IPDLN and its science that we prepare to convene in Banff, Alberta, Canada for the 5th biennial IPDLN Conference – September 11-14. The conference, to be held at the inspiring Banff Centre (www.banffcentre.ca), is almost sold out, with only limited space remaining for late registrants. A tremendous program has been created through the oversight of Scientific Program co-chairs, Drs. Astrid Guttman and Hude Quan. A compelling roster of plenary lectures from Drs. Diane Watson, Jennifer Walker, and Osmar Zaïane is eagerly anticipated, as are topical panel discussions, an entertaining Science Slam session, and a terrific social program. These sessions will be surrounded by rich scientific oral and poster presentations arising from the more than 450 scientific abstracts submitted for review. We are so pleased to see this vibrant scientific engagement from the IPDLN membership and students, and look forward to hosting all delegates in Banff. The Banff conference will also be the venue at which we announce the new Directorship of the IPDLN for the next two years (2019 and 2020). As co-directors, we engaged with a number of individuals and organizations with interest in leading the IPDLN. In the end, two compelling Directorship applications were submitted – one a joint bid from Australia’s Population Health Research Network and the South Australia Northern Territory DataLink, and the other from the US-based Actionable Intelligence for Social Policy. IPDLN members submitted votes on these strong leadership bids through an online voting process, and while the excellence and appeal of both bids was apparent in strong voter support for both, a winning bid has been confirmed, and it will (as mentioned) be announced at the upcoming September conference. As we look forward to the Banff meeting with great anticipation, we are compelled to acknowledge the growing IPDLN legacy created by past directors. We are particularly indebted to our immediate predecessor, Dr. David Ford, and his team at Swansea University. Their work in hosting the 2016 IPDLN conference has been an inspiration to us in the planning of this year’s conference, and their crucial and foundational work in creating an IT platform for the IPDLN website, the membership database, and the new International Journal for Population Data Science has brought the IPDLN to a new level of organizational sophistication. Over the last 18 months, our co-directorship teams from the Institute for Clinical Evaluative Sciences in Ontario and the O’Brien Institute for Public Health at the University of Calgary have built on the foundation established by prior directors to update/enhance the IPDLN website and membership database. The IPDLN has more members than ever before representing a greater number of countries, and we have a more formalized governance structure with the creation of an Executive Committee that will include immediate past-Directors in order to better ensure continuity. A new Executive Committee will be elected by the IPDLN membership following the Banff conference. The waiting is almost over and IPDLN 2018 is upon us! Our scientific domain has never had the prominence or level of anticipation that we currently see. And the IPDLN has grown in its size, vibrancy and scientific scope. The opportunities for us are boundless, and the timing of our upcoming conference could not be better. We are honoured, with our respective organizations, to have had this opportunity to serve as co-directors over the past two years, and look forward to seeing many of you very soon. For those of you who are unable to travel to Canada’s Rocky Mountains this year, we look forward to connecting with you at a later time in the IPDLN’s continuing upward journey.

scholarly journals Thoughts and musings from the new International Population Data Linkage Network (IPDLN) Co-directors

2017 ◽  
Vol 1 (1) ◽  
Author(s):  
Michael Schull ◽  
William Ghali
Keyword(s):  
Big Data ◽  
Executive Committee ◽  
Data Science ◽  
Data Linkage ◽  
Population Data ◽  
Health Data ◽  
Scientific Programme ◽  
Founding Editor ◽  
Health And Social Care

EDITORIAL The beginning of 2017 triggered a change in leadership at the International Population Data Linkage Network (IPDLN), as Professor David Ford’s two year term as director of the network wound down, and the baton was handed on to new Canadian co-leadership, from the Institute for Clinical Evaluative Sciences in Ontario, and the O’Brien Institute for Public Health at the University of Calgary. David Ford’s success and energy during his term were such that our two organizations decided we needed to team up to jointly direct the IPDLN for the next two years. This was endorsed by the IPDLN membership in the lead up to the August 2016 IPDLN conference in Wales, and we are delighted to co-direct this growing network. First off, we want to thank David for his outstanding leadership of the IPDLN over the last two years. He and his team put on an excellent conference in Swansea, with record breaking attendance, excellent presentations, thought provoking plenaries and wonderful facilities and social events that made the conference a huge success. Even the weather cooperated, as the sun shone most of the time (well done David!). In addition, membership of the IPDLN has grown substantially in the last two years, both in number of members and number of different countries represented. David played a key role in the launch of a new journal for our network, the International Journal of Population Data Science (IJPDS), with an editorial board comprised of several IPDLN members, and with Associate Professor Kerina Jones (Swansea University) as founding editor-in-chief. The IPDLN remains a young organization, having had its inaugural conference only in 2008, and we have come a long way in that time. Each subsequent biennial conference has grown in size, sophistication and quality of content, and our membership has steadily increased. In addition, new collaborations between IPDLN researchers and member organizations are continuing to develop. External trends, such as widespread interest in the possibilities of “Big Data” make the work and expertise of IPDLN members more relevant than ever. Common challenges across our countries, such as the perpetual concerns around quality and sustainability of our health and social care systems, make the IPDLN’s ability to foster cross-jurisdiction research and evidence more important than ever. We are committed to building on David’s work and that of the directors before him to further the aims of the IPDLN. As a first step, we have established an interim executive committee, consisting of the current IPDLN co-directors and leaders of the organizations that have previously led the network (James Semmens, Curtin University, Kim McGrail, University of British Columbia, David Ford, Swansea University). Its purpose is to provide strategic advice on the overall direction and deliverables of the IPDLN. The interim executive committee will serve until the next conference in 2018, at which time a new director and a new executive committee will be elected by the membership. One key deliverable will be another outstanding IPDLN conference, and we are pleased to announce it will take place in Banff, Alberta, from September 12-14, 2018. Please mark your calendars now and plan to attend. Dr Hude Quan and Dr Astrid Guttmann have agreed to lead the Scientific Programme Committee, and we will be providing more information on opportunities to participate in the work of that committee in due course. In addition, we aim to continue to increase IPDLN membership in terms of number and geography, especially among countries that are not (or only modestly) represented. We will also help IPDLN member institutions to create more opportunities for collaboration, cross-jurisdictional studies, and shared tools and learning. The scientific focus of our young network is evolving, reflected in the recent decision to substitute “population data” for “health data” in the network’s name. This was welcome in that it reflected the fact that many of our members study more than health data or health outcomes, but it might make it harder to describe the mission of the network. Similarly, how the IPDLN can better contribute to shaping a conversation around our collective mission, advance science between conferences, and ensure that the network and its members are collectively seen as leaders internationally, are questions being explored and will inform the network development plan.  The IPDLN is well-positioned to shape the global scientific agenda in emerging areas such as ‘population data science’ and/or ‘Big Data’.  Such terms, describing domains of scientific inquiry, mean different things to different people.  Our network and its broad and interdisciplinary international membership can help to define what these areas are, by identifying high priority population data science questions and opportunities for ambitious collaborative efforts on a global scale. These are exciting times for the IPDLN and its members, as in this digital health information age the potential for our network is limitless.  In our early days as co-directors, we welcome your input in response to these ideas on the role of the IPDLN (please email us with your ideas and thoughts). We are honoured to have the opportunity to co-lead the IPDLN for the next two years, and recognize that our efforts will be made easier because we are building on the existing strengths of the network and its members.Please email us your ideas and thoughts on the role of IPDLN to:Michael Schull at [email protected] Ghali at [email protected]

scholarly journals Population Data BC: Supporting population data science in British Columbia

2020 ◽  
Vol 4 (2) ◽  
Author(s):  
Tavinder Kaur Ark ◽  
Sarah Kesselring ◽  
Brent Hills ◽  
Kim McGrail
Keyword(s):  
Linked Data ◽  
Large Scale ◽  
Data Science ◽  
Data Linkage ◽  
Population Data ◽  
Cost Effective ◽  
Data Access ◽  
Well Being ◽  
Third Party ◽  
Individual Level

BackgroundPopulation Data BC (PopData) was established as a multi-university data and education resourceto support training and education, data linkage, and access to individual level, de-identified data forresearch in a wide variety of areas including human and community development and well-being. ApproachA combination of deterministic and probabilistic linkage is conducted based on the quality andavailability of identifiers for data linkage. PopData utilizes a harmonized data request and approvalprocess for data stewards and researchers to increase efficiency and ease of access to linked data.Researchers access linked data through a secure research environment (SRE) that is equipped witha wide variety of tools for analysis. The SRE also allows for ongoing management and control ofdata. PopData continues to expand its data holdings and to evolve its services as well as governanceand data access process. DiscussionPopData has provided efficient and cost-effective access to linked data sets for research. After twodecades of learning, future planned developments for the organization include, but are not limitedto, policies to facilitate programs of research, access to reusable datasets, evaluation and use of newdata linkage techniques such as privacy preserving record linkage (PPRL). ConclusionPopData continues to maintain and grow the number and type of data holdings available for research.Its existing models support a number of large-scale research projects and demonstrate the benefitsof having a third-party data linkage and provisioning center for research purposes. Building furtherconnections with existing data holders and governing bodies will be important to ensure ongoingaccess to data and changes in policy exist to facilitate access for researchers.

scholarly journals Population Data Science: The science of data about people

2018 ◽  
Vol 3 (4) ◽  
Author(s):  
Kim McGrail ◽  
Kerina Jones
Keyword(s):  
Data Science ◽  
Data Linkage ◽  
Positive Impact ◽  
Population Data ◽  
Population Level ◽  
Multiple Sources ◽  
Science Field ◽  
Data Intensive ◽  
Collective Work ◽  
The Impact

IntroductionSocietal and individual benefits of data-intensive science are substantial but raise challenges of balancing individual privacy and public good, while building appropriate governance and socio-technical systems to support data-intensive science. We set out to define a new field of inquiry to move collective interests forward. Objectives and ApproachOur objectives were: 1. To create a concise definition of the emerging field of Population Data Science; 2. To highlight the characteristics and challenges of Population Data Science; 3. To differentiate Population Data Science from existing fields of data science and informatics; and 4. To discuss the implications and future opportunities for Population Data Science. Objectives 1 and 2 were met largely through International Population Data Linkage Network (IPDLN) member engagement, Objective 3 was evaluated via literature review, and Objective 4 was achieved through iterative and collective work on a peer-reviewed position paper. ResultsWe define Population Data Science succinctly as the science of data about people. It is related to, but distinct from, the fields of data science and informatics. A broader definition includes four characteristics of: i) data use for positive impact on individuals and populations; ii) bringing together and analyzing data from multiple sources; iii) identifying population-level insights; and iv) developing safe, privacy-sensitive and ethical infrastructure to support research. One implication of these characteristics is that few individuals or organisations possess all of the requisite knowledge and skills comprising Population Data Science, so this is by nature a multi-disciplinary “team science” field. There is a need to advance various aspects of science, such as data linkage technology, various forms of analytics, and methods of public engagement. Conclusion/ImplicationsThese implications are the beginnings of a research agenda for Population Data Science, which if approached as a collective field, will catalyze significant advances in our understanding of society, health, and human behavior and increase the impact of our research.

scholarly journals The Population Health Research Network - Population Data Centre Profile

2019 ◽  
Vol 4 (2) ◽  
Author(s):  
Felicity Flack ◽  
Merran Smith
Keyword(s):  
Population Health ◽  
Health Research ◽  
Data Linkage ◽  
Population Data ◽  
Data Access ◽  
Research Network ◽  
Data Centre ◽  
Wide Range ◽  
Unique Approach ◽  
Data Collections

The Population Health Research Network (PHRN) is an Australian data linkage infrastructure capable of securely and safely linking and integrating data collections from a wide range of sources. It is an example of a national data linkage infrastructure in a country with a federated system of government. This population data centre profile describes Australia’s unique approach to enabling access to linked data from single jurisdictions and from multiple jurisdictions. It covers the background to the establishment of the PHRN as well as information about how it operates today including operating models, governance, data, data linkage and data access. Some of the challenges of data linkage across jurisdictions are also discussed.

scholarly journals Population Data Centre Profile: SA NT DataLink (South Australia and Northern Territory)

2019 ◽  
Vol 4 (2) ◽  
Author(s):  
Matthias Schneider ◽  
Christopher Gordon Radbone ◽  
Stacy Ann Vasquez ◽  
Miroslav Palfy ◽  
Andrew Kristjan Stanley
Keyword(s):  
Service Use ◽  
Data Linkage ◽  
South Australia ◽  
Population Data ◽  
Data Access ◽  
Ethics Committees ◽  
Data Repository ◽  
Strict Adherence ◽  
Clinical Registries ◽  
Human Research Ethics

ApproachUniquely governed by a broad range of consortium partners, SA NT DataLink’s business model operates with flexibility to adapt to researcher priorities and government requirements. Its Data Linkage Unit routinely links data from over 50 sources with more than 57 million records on approximately 2.9 million individuals. It arguably provides the broadest range of linked data sources in Australia, focusing on administrative datasets and clinical registries from various health and human services domains. Operating in strict adherence with the separation principal, SA NT DataLink’s Data Integration Unit separately manages anonymised clinical and service use data in collaboration with the respective data custodians through the Custodian Controlled Data Repository, allowing approved analysts to efficiently access high quality linked anonymised data. To protect individual privacy throughout the process of data linkage and data provision, SA NT DataLink’s processes align with state, territory and federal privacy legislations. Operating consistently with National Health and Medical Research Council guidelines, linkage projects are subject to approvals by the relevant data custodians and approved Human Research Ethics Committees. Noteworthy OutputsSA NT DataLink has provided linkage services to over 160 data linkage projects, informing nationally significant research and policy initiatives, including initiatives to improve indigenous children’s hearing and child development. ConclusionTo respond to a changing data linkage landscape, SA NT DataLink is continuously reviewing and improving its systems, linkage processes and governance, addressing administrative, funding, data access, social licence and data linkage challenges and opportunities to meet increasing demand and new business developments.

scholarly journals LINKAGE: Factors in selecting a data linkage approach

2019 ◽  
Vol 4 (3) ◽  
Author(s):  
Kerina Jones ◽  
David Ford
Keyword(s):  
Decision Making ◽  
Data Science ◽  
Data Linkage ◽  
Population Data ◽  
Ground Truth ◽  
Position Information ◽  
Uk Government ◽  
The Uk ◽  
High Level ◽  
Inform Decision Making

Background The great benefits of linking health datasets for research in the public interest have long been demonstrated. More recently, we are seeing an increase in the availability of wider administrative data, such as employment, education and housing, to add new opportunities for population data science. However, there are challenges to be overcome in selecting a data linkage approach. Main Aim We set out to examine various data linkage approaches, and to formulate some high level questions to inform decision-making. Methods We used published literature to review various data linkage methods in theory and in practical settings. The study was commissioned by the UK Government Statistical Service and a key focus was privacy and confidentiality in data linkage. Results The questions we formulated are based on: Legislative position; Information systems; Nature of datasets; Knowledge-base; Aims and purposes; Ground truth; and Environment. Conclusion There are many factors influencing the selection of a data linkage approach. While not exhaustive, our set of questions covers some of the major ones. The findings of the study are being taken forward by UK Government Statistical Service and government departments to inform decision-making on options for data linkage research and the greater availability of their datasets.

scholarly journals DLforum – A multidisciplinary online discussion forum for data linkage researchers and practitioners

2018 ◽  
Vol 3 (1) ◽  
Author(s):  
Peter Christen ◽  
Thilina Ranbaduge ◽  
Dinusha Vatsalan
Keyword(s):  
Health Informatics ◽  
Online Community ◽  
Data Science ◽  
Data Linkage ◽  
Online Discussion ◽  
Population Data ◽  
Discussion Forum ◽  
Science Data ◽  
Online Discussion Forum ◽  
Methods And Techniques

Data linkage, the process of identifying records that refer to the same entities across databases, is a crucial component of Population Data Science. Data linkage has a history going back over fifty years with many different methods and techniques being developed in various disciplines including computer science, statistics, and health informatics. Data linkage researchers and practitioners are commonly only familiar with methods and techniques that have been developed or are used in their own discipline, and they often only follow research that is being published at venues in their own discipline. There is currently no single online resource that allows data linkage researchers and practitioners across different disciplines to exchange ideas, post questions, or advertise new publications, software, open positions, or upcoming conferences and workshops. This leads to a communication gap in the multi-disciplinary field of data linkage. We aim to address this gap with the DLforum, a public online discussion forum for data linkage. DLforum contains several discussion areas, including publication announcements, resources (software and data sets), information about upcoming conferences and workshops, job opportunities, and general questions related to data linkage. The forum includes a moderation process where all registered users can post content and reply to posts by other users. We anticipate that the number of users registered and the amount of content posted in the forum will show that such an online forum is of value to data linkage researchers and practitioners from different disciplines to effectively communicate and exchange their knowledge, and thus form an online community of practice. In this paper we describe the methods of developing the DLforum, its structure and content, and our plan on how to evaluate the forum. The DLforum is freely available at: https://dmm.anu.edu.au/DLforum/

scholarly journals Healthcare use and costs in the last year of life: a national population data linkage study

2021 ◽  
pp. bmjspcare-2020-002708
Author(s):  
Katharina Diernberger ◽  
Xhyljeta Luta ◽  
Joanna Bowden ◽  
Marie Fallon ◽  
Joanne Droney ◽  
...  
Keyword(s):  
End Of Life ◽  
Secondary Care ◽  
Urban Areas ◽  
Data Linkage ◽  
Hospital Admissions ◽  
Community Support ◽  
Population Data ◽  
Linkage Study ◽  
Healthcare Use ◽  
Admission Rates

BackgroundPeople who are nearing the end of life are high users of healthcare. The cost to providers is high and the value of care is uncertain.ObjectivesTo describe the pattern, trajectory and drivers of secondary care use and cost by people in Scotland in their last year of life.MethodsRetrospective whole-population secondary care administrative data linkage study of Scottish decedents of 60 years and over between 2012 and 2017 (N=274 048).ResultsSecondary care use was high in the last year of life with a sharp rise in inpatient admissions in the last 3 months. The mean cost was £10 000. Cause of death was associated with differing patterns of healthcare use: dying of cancer was preceded by the greatest number of hospital admissions and dementia the least. Greater age was associated with lower admission rates and cost. There was higher resource use in the urban areas. No difference was observed by deprivation.ConclusionsHospitalisation near the end of life was least frequent for older people and those living rurally, although length of stay for both groups, when they were admitted, was longer. Research is required to understand if variation in hospitalisation is due to variation in the quantity or quality of end-of-life care available, varying community support, patient preferences or an inevitable consequence of disease-specific needs.

Impact of cardiac rehabilitation on 3 year outcomes amongst patients after acute coronary syndrome: (ACS) SNAPSHOT ACS follow-up study

2020 ◽  
Vol 41 (Supplement_2) ◽  
Author(s):  
J Redfern ◽  
K Hyun ◽  
D Brieger ◽  
D Chew ◽  
J French ◽  
...  
Keyword(s):  
Acute Coronary Syndrome ◽  
Cardiac Rehabilitation ◽  
Data Linkage ◽  
Research Network ◽  
Funding Source ◽  
Cardiovascular Research ◽  
Coronary Syndrome ◽  
Follow Up Study ◽  
Significant Difference

Abstract Background Cardiovascular disease is the leading cause of disease burden globally. With advancements in medical and surgical care more people are surviving initial acute coronary syndrome (ACS) and are in need of secondary prevention and cardiac rehabilitation (CR). Increasing availability of high quality individual-level data linkage provides robust estimates of outcomes long-term. Purpose To compare 3 year outcomes amongst ACS survivors who did and did not participate in Australian CR programs. Methods SNAPSHOT ACS follow-up study included 1806 patients admitted to 232 hospitals who were followed-up by data linkage (cross-jurisdictional morbidity, national death index, Pharmaceutical Benefit Schedule) at 6 and 36 months to compare those who did/not attend CR. Results In total, the cohort had a mean age of 65.8 (13.4) years, 60% were male, only 25% (461/1806) attended CR. During index admission, attendees were more likely to have had PCI (39% v 14%, p<0.001), CABG (11% v 2%, p<0.001) and a diagnosis of STEMI (21% v 5%, p<0.001) than those who did not attend. However, there was no significant difference between CR attendees/non-attendees for risk factors (LDL-cholesterol, smoking, obesity). Only 19% of eligible women attended CR compared to 30% of men (p<0.001). At 36 months, there were fewer deaths amongst CR attendees (19/461, 4.1%) than non-attendees (116/1345, 8.6%) (p=0.001). CR attendees were more likely to have repeat ACS, PCI, CABG at both 6 and 36 months (Table). At 36 months, CR attendees were more likely to have been prescribed antiplatelets (78% v 53%, p<0.001), statins (91% 73%, p<0.001), beta-blockers (11% v 13%, p=0.002) and ACEI/ARBs (72% v 61%, p<0.001) than non-attendees. Conclusions Amongst Australian ACS survivors, participation in CR was associated with less likelihood of death and increased prescription of pharmacotherapy. However, attendance at CR was associated with higher rates of repeat ACS and revascularisation. Funding Acknowledgement Type of funding source: Foundation. Main funding source(s): New South Wales Cardiovascular Research Network, National Heart Foundation

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