The International Population Data Linkage Network – Banff and Beyond

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William A Ghali Michael J Schull
Published online: Aug 28, 2018


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.


Introduction

The Dementias Platform UK (DPUK) Data Portal is a secure, accessible environment facilitating provision of rich data towards the largest Dementia, cognition and ageing community of cohort studies in the world. DPUK is also providing services for cohort studies and researchers to maximise the research potential of the programme’s community.

Objectives and Approach

As part of the engagement of DPUK cohorts with the Data Portal, cohorts will upload data onto the DPUK instance of UK Secure eResearch Platform infrastructure. The Data Portal allows access to a collaborative working space that allows cohorts to enrich their own data, perform their own analysis, and enhance the research potential of their data whilst making use of expertise at various DPUK sites, such as data linking, curation and multi-modal specialism. Cohort data divided into ontologies allows researchers to access data specific to their study needs and can be requested from multiple cohorts simultaneously.

Results

By utilising the Data Portal researchers have access to cohort data that has been prepared for dementia epidemiology using the agreed ontologies, providing more rapid access to cohort data that otherwise may be large and complex. The knowledge and experience of DPUK staff and collaborators can also help to guide nascent cohorts and feasibility studies into producing research-ready datasets, enabling them to achieve greater impact with their data. A range of analytical tools are provided on the Data Portal making analysis of a cohort’s own data or multiple independent datasets more accessible. Alongside data curation, DPUK also facilitates data linkage to routine sources, beginning with a Wales-wide use case that will expand to the UK over the course of the project.

Conclusion/Implications

Data from international sources accessible using a central platform permits international collaboration, with ontologies allowing previously disparate data to be combined and analysed to build knowledge and research impact. DPUK projects create policy leading results and operational research standards, enhancing cohort impact and discovery of benefits for Dementia patients.

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