News and Events

News and Events

24 October 2022

Drs Abel Kho, Amy O’Hara, and Dennis Culhane to be the 2023-24 IPDLN co-directors

The International Population Data Linkage Network is proud to announce that Dr Abel Kho (Northwestern University), Dr Amy O’Hara (Director, Georgetown Federal Statistical Research Data Center), and Professor Dennis Culhane (University of Pennsylvania) will be the new IPDLN co-directors for 2023-2024!

Dr Abel Kho (L), Dr Emma Gordon (L, Middle), Dr Amy O'Hara (R, Middle) and Dr Dennis Culhane (R) at the 2022 IPDLN Conference

They will be taking over from the outgoing Network co-directors, Dr Emma Gordon (Director, Administrative Data Research UK) and Professor Chris Dibben (co-director, Administrative Data Research Scotland). We thank both Emma and Chris for their diligent stewardship of the IPDLN over the last two years which culminated in a brilliant conference in Edinburgh.

Over the 2023-24 period, the new IPDLN co-directors will maintain and expand the Network’s membership, promote and support the International Journal of Population Data Science, and run the next IPDLN Conference in September 2024.

Dr Abel Kho, Professor of Medicine at Northwestern University and incoming co-director of the IPDLN said: “We are very much looking forward to building upon the welcoming and diverse culture of IPDLN and opening up collaborative opportunities across countries, and across scientific domains.”

The IPDLN facilitates international communication between centres specialising in data linkage and the use of linked data for public benefit. It has around 1,603 members from 60 countries, drawn from academia, government, industry, and not-for-profit entities.

Dr Amy O’Hara, Director of Georgetown Federal Statistical Research Data Centre and incoming co-director of the IPDLN, added: “Within the U.S. we have already begun to create aligned working groups within the Informatics and Epidemiology communities, and to build on existing networks among Evaluation and Social Science scholars and practitioners.”

“We have also spoken to leaders in the federal government who are eager to engage with their international peers and have started outreach among major foundations to increase IPDLN awareness for their program officers and grantees,” said Dr Dennis Culhane, co-director of Actionable Intelligence for Social Policy and incoming co-director of the IPDLN.

 

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10 October 2022

 

Nominations for the 2023-24 IPDLN Executive Committee now open!

We are pleased to announce that nominations to be part of the International population Data Linkage Network Executive Committee for 2023-2024 are now open!

Nominations will be sought based on the following criteria:

• The nominee must be a member of the IPDLN as per the Member record database on 30 June 2022 and demonstrated prior involvement with the IPDLN to be eligible.
• Current Executive Committee Members who have served less than two terms are also eligible for re-election.
• The current Executive Committee can additionally identify candidates and present them to the membership.

The full details about the nominations, including submissions criteria and format, can be found here.

Nominations should be emailed to hub@adruk.org. Deadline is 31 October 2022.

 

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31 August 2022

2022 IPDLN Conference: One week to go!

The 2022 International Population Data Linkage Network Conference will begin in Edinburgh next week. The main conference days will take place 7-9 September, with the pre-conference workshops being held 5-6 September.

This is the largest data linkage conference of its kind, bringing together international experts in the field of population data linkage research. The conference is a perfect opportunity to meet colleagues and peers across the globe for in-person networking, collaboration, and sharing your research. 

 

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1 June 2022

2022 IPDLN Conference: Tickets out now! 

Tickets for the 2022 International Population Data Linkage Network Conference are now available. This year’s conference will be held in Edinburgh, Scotland, 7-9 September. Pre-conference workshops will be held 5-6 September. 

This is the largest data linkage conference of its kind, bringing together international experts in the field of population data linkage research. The conference is a perfect opportunity to meet colleagues and peers across the globe for in-person networking, collaboration, and sharing your research. 

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02 February 2022

Blog: A new linked data resource for kidney failure: findings and impact

Dr Nicole De La Mata, Biostatistician at The School of Public Health, University of Sydney

Health data registers often exist in silos, providing limited insight into patient’s lived health experience. Expanding patient information through data linkage not only makes better use of existing health data but also allows for similar data to be compared between different populations.

Australia and New Zealand have the oldest and most complete clinical registry of people with kidney failure in the world, captured in Australian and New Zealand Dialysis and Transplant Register (ANZDATA). Kidney failure is the most advanced stage of chronic kidney disease, treated either by dialysis, kidney transplantation or palliative care. It is a pressing public health concern and has a huge impact on quality of life, life expectancy and on health systems’ ability to provide costly treatment. Globally, there are other clinical registries, e.g., European Renal Association – European Dialysis and Transplant Association (ERA-EDTA) Registry, United States Renal Data System.

While data held in these registers are useful, they often lack additional health information. This makes it more difficult for health services research to evaluate whether patients are receiving differential care due to their social determinants of health or other health conditions. For example, cause of death in ANZDATA is coded by the treating nephrologist, so it cannot be easily compared to causes of death with other populations. The national death registers offer cause of death using a validated international standard, the International Classification of Diseases. Linked sets of data provide an ideal solution to expand patient information in this context.

The CELESTIAL study: Cause of death for living kidney donors and people with end stage kidney disease in Australia and New Zealand; a data linkage study 1980-2014

Researchers at the Sydney School of Public Health (University of Sydney) developed a research program which sought to understand how survival and causes of death in people with kidney failure differ to the general population. This comparison allows us to get a better perspective on how kidney disease impacts life-course and identify people for whom the burden is greater. For example, people are living longer in the general population, but is this reflected in those with kidney failure? Do people with kidney failure die more from certain causes? How do clinicians counsel newly diagnosed patients on how long they will live with kidney failure?

Data linkage offers a means of answering all these research questions, and more, by creating a new linked data resource between ANZDATA and national death registers. While this approach can be costly and lengthy, it uses existing data going back for many years, and is more efficient than traditional observational cohort studies that need to recruit individuals and follow-up over time.

In 2015, we partnered with Kidney Health Australia, a leading national patient advocacy charity, through a competitive research grant process. The data linkage infrastructure and process are entirely different in Australia and New Zealand. There are two main methods of linking data together: deterministic and probabilistic. Deterministic linkage uses a unique identifier to match records of the same person, while probabilistic linkage uses personal identifiers (E.g., name, address, date of birth) to estimate how likely the records are from the same person.

In New Zealand, the National Health Index number is a unique person identifier that allows for deterministic matching. In Australia, there is no national unique identifier (health related or otherwise), so probabilistic linkage was used. This meant linkage was far more costly and took longer due to approvals and probabilistic method. Data linkage in Australia took around two years and New Zealand took around four months.

Our work provided estimates of excess deaths; a greater number of deaths is seen in people with kidney failure than expected from the general population of the same age, sex, calendar year and country. We found people with kidney failure and a sub-population with kidney transplant had excess deaths from stroke, cardiovascular disease, and cancer. This was most notable in younger ages and women. Our latest in-depth study on sex differences, published in the British Medical Journal, found the burden of kidney failure is far greater for women than men; women lose their survival advantage over men and have more excess deaths.

To date, this research program has generated nine published papers, 20 conference presentations and received local (NSW Health Scientific Talent 2020) and international prizes (TTS Young Investigator Awards, ERA-EDTA Top Young Abstract).

Most importantly, our work is now being used in the field of kidney disease and transplantation. Our stroke work was recognised as a noteworthy literature in 2020 for organ transplantation and contributed to economic models for the National Institute for Health and Care Excellence drug appraisal in the UK. Our cancer work contributed to international cancer guidelines for the transplant population. Our sex differences work has supported several other studies exploring equity in access to transplantation.

Improving the overall efficiency of the health system is the goal to eliminating health inequities and ensuring everyone can meet their full health potential.

We’re hoping all our work will help support that and improve how people with kidney failure access healthcare. Expanding data linkage to health services data, such as prescription medications, Medicare rebated health services, and hospital admissions, can extend insights by revealing how health care and services are delivered to people with kidney failure, assess effective methods of treatment, and highlight delays in access to health care services.

 

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11 January 2021

 

IPDLN Conference: Call for abstracts now open!

We are pleased to invite you to submit an abstract for the 2022 International Population Data Linkage Network Conference. The conference will be held in Edinburgh, Scotland on 7-9 September.

Abstracts need to address the conference theme, Data linkage-research: informing policy and practice, and one of the sub-themes. The full list of sub-themes can be found on the 2022 IPDLN conference page.

When submitting your abstract, you will have the option to choose your preferred presentation format:

• Oral presentations will be grouped into themes and presented in concurrent sessions, with time for questions.
• Poster presentations will be on display at the conference during dedicated poster sessions.

 

Please refer to the submission guidelines for further instructions, as well as the full list of the the sub-themes for this year’s conference.

Submit your abstract by the 25 March by creating an account with EasyChair.

Other ways to get involved

Expert Question & Answer (Q&A) panels and pre-conference workshop proposals

The conference will include Expert Panel Q&A sessions scheduled as part of the main conference programme. These sessions provide an opportunity for a selection of Masters and PhD students to give a rapid fire presentation and to receive feedback on their research from the expert panel.

We are looking for groups of four to five experts including at least one early career researcher (Masters, PhD student, or within five years of working full-time) to form a panel aligned to one of the conference sub-themes. 

This year’s IPDLN conference will also host pre-conference workshops on Monday 5 September (virtual) and Tuesday 6 September (in-person). These are intended to be interactive sessions contributing to the conference themes that will run for at least 90 minutes. 

The deadline for submitting applications is 25 March 2022. You can find all the guidelines, application forms, and links to submitting your abstracts on the 2022 Conference page.

Crowd is now ready to be used – sign-up to participate in the 2022 conference!

We are also pleased to announce that Crowd is also now open for sign-ups! The IPDLN conference will bring together population data science experts and researchers from across the world to network and share their research with their colleagues. To support the conference, we will be using the Crowd platform to create a global online community for this field.

You will need to sign-up to the Crowd platform to register for the conference (tickets will be made available later this month). We’ll be in touch closer to the registration opening with further details.

 

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13 October 2021

 

Blog: The Value of International Collaborations in Population Research

Dr Lisa N. Sharwood, Epidemiologist & Research Fellow, The Black Dog Institute, Australia

In an unprecedented time for the entire world, when we are challenged at home, at work, in our health services and in research, the value of international collaboration in population research has never been more important. International collaboration has been critical during the Covid-19 pandemic to share time critical information about the rapidly changing coronavirus disease. This collaboration has also helped to harness and synergise scientific expertise around the world and to inform treatment and recovery across populations. We need to understand what works and what doesn’t; we need to help those with less resources than others; and we have learned the value of shared experiences and compassion.

As an epidemiologist and data scientist working in population level research in Sydney, Australia, I place enormous value on collaboration both locally and internationally. I have lived and worked in six different countries across three continents and travelled extensively throughout my combined clinical and research career. Short and long-term international mobility is common in research careers for various reasons including conference or collaboration experiences, travelling fellowships, engagement in established or potential projects to name a few. Some of the benefits of international collaboration in my research have included:

• combining data concerning injuries of low incidence (such as traumatic spinal cord injury) to better understand treatment responses and moderators of patient outcomes
• comparison of health services across numerous countries, to harmonise care and identify specific resource needs in low- and middle-income countries
• comparison of patient outcomes in different service configurations and settings.

 

Equally, the adage ‘two heads are better than one’ simply expresses the importance of learning from one another, sharing methodology, sharing code, sharing data, and collectively working to reduce the health burden associated with the social determinants of health across populations.

The social determinants of health are understood as “the circumstances in which people grow, live, work, and age, and the systems put in place to deal with illness” (WHO) and are central concepts to population health. These determinants must be recognised and intentionally acted upon to continue driving toward equity in health across populations. The World Health Organisation defines health equity as “the absence of unfair and avoidable or remediable differences in health among population groups defined socially, economically, demographically, or geographically”. Collaboration is fundamental to the aspirational goal of global health equity.

A digital revolution in healthcare is rapidly underway right around the world. Healthcare data is increasingly digitised and used with greater levels of sophistication and computational capacity than ever before. Approximately 30% of the worlds data volume is being generated by the healthcare industry, with projections of compound annual growth rates of 36%. By 2025, humans are projected to experience almost 5000 digital device interactions, per capita, per day. Much of that promises to be healthcare related.

Data science can only aspire to make the best use of even some of this data if we collaborate widely and wisely.

The Covid-19 pandemic has forged different ways of working and perhaps encouraged collaborations that did not previously exist. We have learned to work more flexibly and to use multiple, creative digital methods for communication, including fully virtual conferences. While we undoubtedly eagerly await a return to the joys and benefits of international travel, some of these Covid-imposed changes have benefits that can and should remain.

 

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13 October 2020

ADR UK TO DIRECT INTERNATIONAL POPULATION DATA LINKAGE NETWORK IN 2021-2022

It has been announced today that Administrative Data Research UK (ADR UK) will take over the Directorship of the International Population Data Linkage Network (IPDLN) for 2021-22. The Network will be Co-Directed by Dr Emma Gordon, Director of the ADR UK Strategic Hub, and Professor Chris Dibben, Co-Director of ADR Scotland.

ADR UK is a partnership transforming the way researchers access the UK’s wealth of public sector data, to enable better informed policy decisions that improve people’s lives. As such, it is well positioned to lead and build on the progress of the IPDLN in 2021-22.

The IPDLN facilitates international communication between centres specialising in data linkage and the use of linked data for public benefit. It has around 1,100 members in 55 countries, drawn from academia, government and industry.

Directing this Network will connect ADR UK to a mutually beneficial international community of best practice, and position the partnership at the forefront of global efforts to harness the power of linked population data.

Over the 2021-22 period, the new IPDLN Co-Directors will maintain and expand the Network’s membership, promote and support the International Journal of Population Data Science, and run the next IPDLN Conference in September 2022.

IPDLN’s current Director, Dr Merran Smith, Chief Executive of the Population Health Research Network (PHRN), said: “On behalf of the IPDLN Executive Committee, I am very pleased to announce Dr Emma Gordon and Professor Chris Dibben from ADR UK as the Network’s Co-Directors for 2021-22. The close alignment of ADR UK’s mission with that of the IPDLN, as well as their experience developing their own UK partnership between government and academia, makes them an excellent fit for the role and I wish them every success as the incoming Co-Directors.

I am very grateful to Australia’s national data linkage infrastructure, the PHRN, which is funded by the National Collaborative Research Infrastructure Strategy, for its support of my Directorship over the past two years. I also thank the IPDLN Executive Committee, PHRN Program Office staff and the many others who have provided support and helped to ensure a successful IPDLN 2020 Conference in what has been a somewhat challenging pandemic year.”

Dr Emma Gordon, Director of the ADR UK Strategic Hub and incoming Co-Director of IPDLN, said: “I am hugely excited for ADR UK to be taking forward leadership of the IPDLN for 2021-22, and the opportunities this provides.

“Since ADR UK’s inception in 2018, we have made great strides in developing partnerships between government and academia across our four nations, transforming data linkage and research access to inform policy and practice. However, exciting developments are also being made in many other countries, and taking on the IPDLN will plug us directly into the pre-emminent international community of best practice in this field, opening up countless opportunities for shared learning.”

Professor Chris Dibben, Co-Director of ADR Scotland and incoming Co-Director of IPDLN, said: “Many thanks to Dr Merran Smith for her Directorship of the IPDLN for 2019-20. I very much look forward to becoming a Co-Director, and continuing to develop partnerships with centres across the globe, from industry, academia or government that use data for public benefit. I am confident that membership of the network will continue to increase, as more researchers discover the value in data linkage, resulting in all centres benefiting from learning best practice from each other.”

Notes to editors

About ADR UK

ADR UK (Administrative Data Research UK) is a partnership transforming the way researchers access the UK’s wealth of public sector data, to enable better informed policy decisions that improve people’s lives.

By linking together data held by different parts of government, and by facilitating safe and secure access for accredited researchers to these newly joined-up data sets, ADR UK is creating a sustainable body of knowledge about how our society and economy function – tailored to give decision makers the answers they need to solve important policy questions.

ADR UK is made up of three national partnerships (ADR Scotland, ADR Wales, and ADR NI) and the Office for National Statistics (ONS), which ensures data provided by UK government bodies is accessed by researchers in a safe and secure form with minimal risk to data holders or the public.

The partnership is coordinated by a UK-wide Strategic Hub, which also promotes the benefits of administrative data research to the public and the wider research community, engages with UK government to secure access to data, and manages a dedicated research budget.

ADR UK is funded by the Economic and Social Research Council (ESRC), part of UK Research and Innovation.

To find out more, visit adruk.org or follow @ADR_UK on Twitter.

 

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