Join us in Rotterdam for the 2026 IPDLN Conference!
Join us in Rotterdam for the 2026 IPDLN Conference!
Measuring, Monitoring, explaining, and Minimizing Data Linkage Bias to Create Trustworthy AI Systems
Julia Lane, PhD
Professor, NYU Wagner Graduate School of Public Service
Sunday, September 15
5:10-5:30 p.m.
Description
The national and international frameworks for developing trustworthy AI systems have highlighted the importance of ensuring that the systems are “valid and reliable, safe, secure and resilient, accountable and transparent, explainable and interpretable, privacy-enhanced, and fair with harmful bias managed”. Record linkage is a common building block for many AI systems: the science is essential to the creation of high-quality training and test datasets that are combined from heterogeneous sources. But record linkage can also be an unintended source of harmful bias for both technical and socio-technical reasons. The impact of many technical decisions are not fully understood by the implementers. And many stakeholders who might be affected by incorrect linkages are not directly involved in the multiple decisions that are made. This presentation argues that the data linkage community in general, and IPDLN in particular could play an essential role in mitigating such bias through identifying, measuring, and transparently reporting the multiple sources of bias. It provides a potential framework for doing so.
Keynote Bio
Julia is a tenured full Professor at the NYU Wagner Graduate School of Public Service. She was a senior advisor in the Office of the Federal CIO at the White House, supporting the implementation of the Federal Data Strategy. She recently served on the Advisory Committee on Data for Evidence Building and the National AI Research Resources Task Force and currently serves on the Secretary of Labor’s Workforce Innovation Advisory Committee and the National Science Foundation’s Advisory Committee on Cyberinfrastructure.
Julia has initiated and founded or co-founded a number of public data infrastructures, including the Census Bureau’s Longitudinal Employer-Household Dynamics program, the USPTO’s Patentsview, STAR METRICS/UMETRICS at the Institute for Research on Innovation and Science at the University of Michigan, and Statistics New Zealand’s Integrated Data Infrastructure. She founded the Coleridge Initiative, a not for profit working with governments to ensure that data are more effectively used for public decision-making. She also has created data access infrastructures: the remote data access enclave at NORC at the University of Chicago, the Administrative Data Research Facility at NYU and then the Coleridge Initiative. She developed the Applied Data Analytics training program at the Coleridge Initiative and the Executive Certificate in Data Literacy and Evidence Building at NYU and the University of Maryland. She is currently working with a number of scientific and statistical agencies on the Democratizing Data project; an example of the work is here. She has authored over 80 scientific publications, edited or coauthored 13 books, and received over $180 million in grants and contracts from national and international agencies and foundations. She holds a PhD in Economics and an MA in Statistics.
Empowering Communities: The Impact of Data Linkage in Civic Engagement
Jeanine Abrams McLean, PhD
President, Fair Count
Monday, September 16
1:15-2:00 p.m.
Description
This presentation will focus on the implications of data linkage in civic engagement. Drawing on experiences from Fair Count, Dr. Jeanine Abrams McLean will explore how linking population-level data can empower communities, while addressing challenges, successful strategies, and future directions for leveraging data to drive meaningful civic participation.
Keynote Bio
Dr. Jeanine Abrams McLean is the President at Fair Count, a nonprofit, nonpartisan organization, founded by Stacey Abrams. Fair Count’s goal is to ensure that every person in Georgia and the nation is counted for a fair and accurate census and to build pathways to continued civic participation, including voting and redistricting. Jeanine is a highly skilled researcher with over 20 years of experience conducting population-based studies and projects. She led the creation of statistically-relevant census undercount maps of all 50 states with a focus on Black and Latinx communities and advocated for community-driven solutions through the pairing of researchers and organizers. Jeanine was recently selected for the Keseb Democracy Fellowship program, which focuses on cross-country learning with democracy entrepreneurs from the United States, Brazil, and South Africa.
Data Infrastructure to Support Population Science: The New Zealand IDI
Leah Richmond-Rakerd, PhD
Assistant Professor, Department of Psychology, University of Michigan
Tuesday, September 17
9:00-9:45 a.m.
Description
Dr. Richmond-Rakerd will speak on the conference theme of Data Infrastructure. She will feature the New Zealand Integrated Data Infrastructure (IDI), a collection of de-identified, individually-linked, whole-population administrative data sources. Dr. Richmond-Rakerd will describe the IDI’s development and maintenance, procedures for data access, and salient data characteristics. She will also highlight unique benefits of the IDI for population science, with examples from her team’s own research.
Keynote Bio
Leah Richmond-Rakerd is an Assistant Professor of Psychology at the University of Michigan. She received her Ph.D. in Clinical Psychology with a Minor in Psychological Statistics and Methods from the University of Missouri and completed postdoctoral training at Duke University. Dr. Richmond-Rakerd’s research centers on the development and outcomes of problems in self-regulation, such as antisocial behavior, substance misuse, and self-harm. She is particularly interested in the implications of self-regulation difficulties for processes of aging and inequalities in population health. Dr. Richmond-Rakerd frequently uses linked population data in her work, including administrative registers from New Zealand, Denmark, and Norway.
Record Linkage in State Government to Enable Whole Person Health
Jessie Tenenbaum, PhD
Tuesday, September 17
4:45-5:30 p.m.
Description
In this talk, Dr. Jessie Tenenbaum, former Chief Data Officer at NC DHHS, will describe record linkage across a health and human services agency to enable a comprehensive Whole Person Health view, facilitating real-time service connections and informed policy-making through aggregated data analysis. The speaker will address the significant technical and governance challenges involved, including the integration of disparate data systems and coordination between multiple legal entities with differing applicable regulations. The speaker will conclude with examples of successful use cases including tracking COVID-19 vaccination rates among Medicaid beneficiaries and enhancing outreach for food assistance programs. These successes showcase the practical benefits of integrated data systems in improving health and human services outcomes.
Keynote Bio
Dr. Jessie Tenenbaum recently concluded a five-year tenure as the Chief Data Officer for the North Carolina Department of Health and Human Services (NC DHHS). In this role, she spearheaded numerous initiatives to enhance data-driven decision-making and improve public health outcomes across the state. Dr. Tenenbaum is also an Associate Professor at Duke University where her research focus is on informatics and AI methods to improve whole person health. Nationally Dr. Tenenbaum has served as an Associate Editor for the Journal of Biomedical Informatics, an elected member of AMIA’s Board of Directors, and on the Board of Scientific Counselors for the National Library of Medicine.
Why a One Health approach is vital for health prevention surveillance and public health response for both communicable and non-communicable diseases
Lisa Sharwood, PhD
Senior Research Fellow, School of Population Health, Faculty of Medicine and Health, University of New South Wales
Wednesday, September 18
11:00-11:45 a.m.
Description
To improve preparedness for and response to public health emergencies for both communicable and non-communicable diseases, it is vital to be able to rely on integrated surveillance and monitoring systems which use a One Health approach and are designed for scalability and enable interoperability. One Health is a collaborative, trans-sectoral, and multi-disciplinary approach integrating human, animal and environmental data and insights to facilitate the prediction and control of disease at this interface. Additionally, the fields of chronic disease, mental health, injury, occupational health (and other noncommunicable diseases) will benefit from a One Health approach involving collaboration across disciplines and sectors.
The challenges associated with collecting, collating, sharing, and integrating data from different locations and from the human, animal and environmental sectors has meant that globally, an optimal One Health approach is yet to be achieved for both communicable and non-communicable diseases in an interoperable and timely manner to enable targeted, efficient public health prevention and response. This keynote presentation will discuss an overview (historical and developing aspects) of surveillance systems internationally, including One Health surveillance systems, including any using artificial intelligence. It will provide an overview of the key areas of focus within the complex environment that One Health surveillance must operate in if it is to be successfully deployed. These include the supportive funding, policy, and legislation (such as for data sharing), data sharing itself and related security, data and systems integration, data maturity and public trust. The ideal One Health surveillance system should ensure the mature handling of data coverage, connectedness, analysis, and timely response. Lessons from mature and integrated One Health surveillance systems in other countries, such as Nordic countries, Canada, and the United Kingdom, can inform the development of equivalent systems where they do not yet exist either at all or in such maturity.
Current surveillance system developments in Australia will be presented, including the recently awarded $2.98 to establish our first National Injury Surveillance System, as well as progress of the One Health focussed Australian CDC.
Keynote Bio
DR LISA N. SHARWOOD is an experienced epidemiologist specialising in injury, public health, and health services research with 20 years of experience in academic, government, and industry settings. Sharwood applies skills in risk assessment and mitigation, utilising comprehensive data and system analyses to provide evidence-based evaluations for improving health and safety outcomes. She is dedicated to advocating for health and health system optimisation through data driven strategies, and to translating evidence-based findings to improve practice and policy for cost effective health care.
Dr Sharwood is a Senior Research Fellow in the School of Population Health, Faculty of Medicine and Health, University of New South Wales, and an Adjunct Professional Fellow in the School of Mechanical Engineering, Faculty of Engineering and IT, University of Technology Sydney. Her most recent government appointment as Assistant Director in the Australian CDC Establishment Branch involved leading a One Health data and systems mapping project around Australia to profile potential surveillance options for inclusion into the CDC. Sharwood’s expertise has since been recognised by award of a $2.98M MRFF Australian government grant to establish the first National Injury Surveillance system in the country, in partnership with the Australian Institute for Health and Welfare, the Australian Competition and Consumer Commission, the Australasian College of Emergency Medicine, and the Monash University Accident Research Centre.
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