Academic lead for Information Governance across the various Swansea University-based data intensive/linkage initiatives to ensure data protection and maximise data utility. Leading the active Innovative Governance working group of the Farr Institute: working collaboratively to advise and influence the developing data governance landscape to promote the safe reuse of data. Leading a research programme in IG, including work to inform cross-centre research and how emerging data types, such as genetic data, can be used in conjunction with structured micro-data. Strong interest in the development of innovative disease registers that incorporate patient reported data for combination with health data, notably, the UK MS Register. Regular advisor and invited speaker on data governance. Academic lead for Public Involvement and Engagement. Established a Consumer Panel for data linkage research. Leading public debates and engagement events on the use of anonymised data for research.

Kimberlyn McGrail, PhD, is a professor at the University of British Columbia, associate director of the UBC Centre for Health Services and Policy Research, an associate with the Centre for Clinical Epidemiology and Evaluation, and a board member and scientific advisor for Population Data BC. Kim’s current research interests are in evaluation of health system policy interventions, aging and the use and cost of health care services, and governance of access to data for research purposes. Her research is conducted in collaboration with policy and decision makers, including, including the BC Ministry of Health, BC’s Health Authorities, Canada Health Infoway, the Health Council of Canada and the Canadian Institute for Health Information. Kim was the 2009-10 Commonwealth Fund Harkness Associate in Health Care Policy and Practice. She holds a PhD in Health Care and Epidemiology from the University of British Columbia, and a Master’s in Public Health from the University of Michigan.

Michael Schull is President, CEO and Senior Scientist at the Institute for Clinical Evaluative Sciences, and Professor in the Department of Medicine at the University of Toronto. His research focuses on health service utilization, quality of care, health system integration and patient outcomes, and the evaluation of health policy. His studies use administrative health datasets and linkages with clinical data, and he works closely with health system decision and policy makers. Dr. Schull practices as an Emergency Medicine specialist at Sunnybrook Health Sciences Centre in Toronto.

Peter Christen is a Professor in the Research School of Computer Science at the Australian National University (ANU) in Canberra. He graduated with a PhD in Computer Science from the University of Basel, Switzerland, in 1999. His research interests are in record linkage and data mining, with a focus on privacy and machine learning aspects of record linkage. He has published over 130 articles in these areas, including in 2012 the monograph "Data Matching" published by Springer.

Website:
http://users.cecs.anu.edu.au/~christen/

Cláudia Medina Coeli, MD, PhD, is an Associate Professor at the Federal University of Rio de Janeiro. Dr. Coeli is a pioneer in probabilistic data linkage in Brazil, which she has developed both for academic research and for use by local and national-level health departments in the country. Additionally, she developed, along with Kenneth Rochel de Camargo Jr., the open-source record linkage software OpenRecLink. Her current research interests are health information systems, probabilistic record linkage, big data mining in health and systems science.

Website:
https://linkdatapopufrj.wordpress.com/

Twitter:
@coelicm

Linked in:
https://www.linkedin.com/in/claudia-medina-coeli-98178645/

Research Gate:
https://www.researchgate.net/profile/Claudia_Coeli

Elizabeth Ford is a Lecturer in Medical Research Methodology at Brighton and Sussex Medical School. She holds a BA(Hons) in Psychology with Physiology (Oxford) and an MRC-funded PhD in Clinical Health Psychology (Sussex). Her post-doc positions were in health psychology (Sussex), psychiatric epidemiology (Barts Medical School), and primary care epidemiology (BSMS). She has gained a reputation in using a range of methods to explore data quality in electronic patient record databases and other digital health data, as well as examining ethics and governance issues in the use of health big data. Her clinical interests are dementia, postnatal mental health and rheumatoid arthritis. In 2016 she was awarded funding from the Wellcome Trust to identify patients with initial indications of dementia in primary care, borrowing analysis techniques from astrophysics, and she was appointed to the first cohort of Future Leaders in Health Data Science at the Farr Institute of Health Informatics Research.

Website:
https://www.bsms.ac.uk/dr-elizabeth-ford
http://www.bsms.ac.uk/astrodem

Twitter:
@DrElizabethFord

Linked in:
https://www.linkedin.com/in/elizabeth-ford-5a989781/

Alan Katz is the Director of the Manitoba Centre for Health Policy and Professor in the Departments of Community Health Sciences and Family Medicine at the University of Manitoba. He is also the MHRC Chair in Primary Prevention Research. He received his medical training at the University of Cape Town in South Africa and a MSc from the University of Manitoba. He is a past chair of the Health Research Ethics Board in the Max Rady College of Medicine, Rady Faculty of Health Sciences and has been a researcher at the Manitoba Centre for Health Policy for over 14 years. His research is focused on the use of Administrative data for Primary Care delivery in First Nations communities and quality of care indicators, knowledge translation and disease prevention. He currently holds over $4 million in research grants as the nominated principal investigator and is a co-investigator on grants valued at over $10 million.

Milton Kotelchuck PhD MPH is Professor of Pediatrics at Harvard Medical School and Senior Scientist in Maternal and Child Health (MCH) at the Massachusetts General Hospital. He received his PhD in Personality and Developmental Psychology and an MPH in MCH and Epidemiology from Harvard University. He has extensive experience evaluating public health programs and policies to improve birth outcomes and child health. His research examines the adequacy and content of prenatal and inter-conception care, racial disparities in birth outcomes, maternal morbidity, child health services, fatherhood/male health services, MCH Life course, and health data policy. Dr. Kotelchuck initiated the population-based Massachusetts Pregnancy to Early Life Longitudinal (PELL) data system; developed the widely-used Adequacy of Prenatal Care Utilization Index, and was the founding Editor of the Maternal and Child Health Journal. He e serves on numerous U.S. national committees to improve perinatal, child and women’s health and health services.

Graeme Laurie is Professor of Medical Jurisprudence in the School of Law in the University of Edinburgh. His research interests relate to all aspects of medical law and ethics, with a particular focus on health research regulation. He holds a Wellcome Senior Investigator Award in Medical Humanities (2014-2019), and is Founding Director of the JK Mason Institute for Medicine, Life Sciences and the Law. He is a member of the Farr Institute, and former member of the Nuffield Council on Bioethics and the British Medical Association Medical Ethics Committee (both 2009-2015).

Website:
http://www.law.ed.ac.uk/people/graemelaurie

Twitter:
@GraemeLaurie

Nathan is a Senior Research Associate at the UCL Institute of Health Informatics (IHI) and independent Digital Health Consultant working on projects in clinical care and research. He is the Information Governance Lead for the Clinical Research Informatics Unit within the University College London Hospitals National Institute for Health Research Biomedical Research Centre and is the General Data Protection Regulation Taskforce Lead for the European Institute for Innovations through Health Data (i~HD).

Nathan's research interests include the role of information systems in supporting healthcare delivery and empowering patients, and Information Governance in the use of genetic, health and social care records in clinical research, particularly in the Age of Information and Big Data. His main focus is on using a clear understanding of privacy, confidentiality, transparency and accountability in data use to drive discovery from health data and engagement through outreach and education. He leads on the Information Law and Governance in Clinical Practice module within the Health Informatics Programme at UCL IHI and Information Security and Confidentiality for the MBBS Programme.

Christine is a Senior Principal Research Scientist in CSIRO Data61.

Christine's research focusses on methods to address the balance between allowing data access and use with protecting privacy and confidentiality of people and organisations represented in data. Her work was recognised with a Newton Turner Career Award 2010, awarded to exceptional senior scientists in CSIRO.

Christine has over 110 publications in refereed journals and conferences, across her fields of interest. Christine was awarded the 2000 Australian Mathematical Society Medal for distinguished research in the mathematical sciences and the 1996 Hall Medal of the Institute for Combinatorics and Applications for outstanding contributions to the field. In 2003 Christine was included on the National Pioneer Women's Hall of Fame Signature Quilt: A Patchwork of Empowerment.

Professor David Preen is the Chair in Public Health at the School of Population Health, The University of Western Australia (UWA). He was the Director of the UWA Centre for Health Services Research from 2006-2015 and holds honorary positions at the University of South Australia and the College of Medicine, Swansea University (UK). He has been involved with conducting public health and health services research using population-based linked data for almost 15 years to study areas including: i) cancer service delivery, ii) pharmaco-epidemiology, iii) chronic disease management, iv) morbidity of marginalised populations, and v) methodological advances using medical record linkage.

Rainer Schnell holds the chair for Research Methodology in the Social Sciences at the University of Duisburg-Essen, Germany. He has been the Director of the Centre for Comparative Surveys at City, University of London 2015-2017. Rainer Schnell founded the German Record Linkage Center and was the founding editor of the journal Survey Research Methods. He is the author of books on Statistical Graphics (1994), Nonresponse (1997), Survey Methodology (2012), and Research Methodology (10th ed. 2013). His research focuses on nonsampling errors, applied sampling, census operations, and privacy preserving record linkage (PPRL). Most of his current work is dedicated to cryptographic hardening of Bloom Filter based PPRL.

Website:
www.methodenzentrum.de

Professor Henrik Toft Sørensen is Professor of Clinical Epidemiology and Chair of the Department of Clinical Epidemiology at Aarhus University Hospital, Denmark. He is adjunct professor at Stanford University and Boston University. He is a physician and specialist in internal medicine and hepatology. He has trained at several major Danish hospitals and acted as a clinician until 2005.

Professor Sørensen has more than 25 years of experience in clinical and epidemiological research. His research covers, among other things, cancer epidemiology and the prognosis of major chronic diseases, including multimorbidity.

Professor Sørensen is a member of the Board of Directors of the Danish Council for Independent Research and Editor-in-Chief of Clinical Epidemiology.

Associate Professor, Health Law and Regulation; Deputy Director, HeLEX@Melbourne, Melbourne Law School. Author of Genetic Data and the Law (CUP,2012) Mark’s research interests include the regulation of personal information with particular emphasis upon health data governance. Immediate past Chair of the Confidentiality Advisory Group (England and Wales), he has served as policy advisor to the Health Research Authority (England) and as a member of the drafting group for the OECD Recommendation on Health Data Governance. He is a member of the Ethics Advisory Group for Genomics England and an advisor to the Data Protection (GDPR) and International Health Data Sharing Forum (GA4GH).

Twitter:
@DrMJTaylor

Linked in:
https://www.linkedin.com/in/mark-taylor-94a1579

Professor Sallie Pearson heads the Medicines Policy Research Group at the Centre for Big Data Research in Health, UNSW Sydney. She is also the Scientific Director of the Centre for Research Excellence in Medicines and Ageing (2014-2019) and an Honorary Professor at the Menzies Centre for Health Policy, University of Sydney. Sallie is a behavioural scientist and health service researcher with 20 years’ experience in quality use of medicines research. In the last decade, her research has had a strong focus on the post-market surveillance of prescribed medicines using population-based, linked routine data collections. She has published widely on contemporary clinical and policy issues with a strong focus on cancer medicines and opioids. Sallie is also an active member of peak national medicines policy committees in Australia including the Drug Utilization Sub-Committee of the Pharmaceutical Benefits Advisory Committee and the Medication Safety Oversight Committee of the Australian Commission on Safety and Quality in Health Care. As Chair/ Deputy Chair of the NSW Population Health Service Research Ethics Committee (2006-2017), Sallie is a leading authority and shaped policy on the ethics and governance of health data linkage for research.

Website:
https://cbdrh.med.unsw.edu.au/

Dr Merran Smith is the inaugural Chief Executive of the Population Health Research Network (PHRN), a national research infrastructure network established in 2009. PHRN supports the linkage of Australia’s population-based health and other human services data and provision of the linked data for approved research projects. It receives core funding from the Australian government, with additional support from state and territory government agencies and universities. The University of Western Australia (UWA) is lead agent for the PHRN. Merran who is based at UWA has a BSc, BA (Economics), MSc (Physiology) and PhD (Pathology) from the University of Melbourne. Her interests include development/management of data linkage infrastructure and health and health services research.

Website:
www.phrn.org.au

Dr Emma Gordon is the inaugural Director of the Administrative Data Research UK (ADR UK) programme at the Economic & Social Research Council (ESRC), which has been running since 2018. Emma is responsible for setting the strategic direction for the programme and leads on the coordination of the partnership and engagement with senior stakeholders, to improve access and analysis of administrative data to inform policy decisions. Emma joined ADR UK from HM Treasury, where she led the team supporting government economists and social researchers across government. Prior to this, Emma was Head of Health Analysis at the Office for National Statistics (ONS), and at the start of her career was a post-doctoral researcher on the Avon Longitudinal Study of Parents and Children (ALSPAC). Emma holds a degree in zoology from the University of Aberdeen, a PhD in bird flight kinematics from the University of Bristol and an MSc in physical activity, nutrition and public health from the University of Bristol. Emma is also co-director of the International Population Data Linkage Network (IPDLN), a role she holds in partnership with Prof. Chris Dibben.

Website:
www.adruk.org and www.ipdln.org

LinkedIn

Twitter:
@emma_v_gordon

Professor Chris Dibben is Director of the Scottish Centre for Administrative Data Research (SCADR), and is Chair of Geography at the School of GeoSciences, University of Edinburgh. He is co-lead for the ADR Scotland partnership, and runs a team of researchers working on the Lifelong Health and Wellbeing Strategic Impact Programme, exploring data relating to health and wellbeing impacts of commuting, education, and Scotland’s New Towns. Chris is also a member of the ADR UK Leadership Committee.

Marcos is a Lecturer in Artificial Intelligence, Deep Learning, Databases, and Big Data in the Department of Statistics at LSE. He holds a PhD in Computer Science (emphasis on high-performance computing) from Federal University of Rio Grande do Sul (2010, UFRGS, Brazil) and a postgraduate certificate in Health Data Science (2018, UCL Institute of Health Informatics, UK), where he was also a postdoctoral fellow funded by The Royal Society (2016-2018). His research concentrates mostly on data linkage tools and computational analytical models applied to massive databases. He led the design of AtyImo and contributed to CIDACS-RL, two mixed (deterministic and probabilistic) data linkage tools used for the design of the 100 Million Brazilian Cohort and other population-based cohorts at CIDACS (Salvador, Brazil), where he is also an associate researcher.

Website:
https://marcosebarreto.github.io/

Twitter:
@marcosebarreto

LinkedIn:
www.linkedin.com/in/marcosennesbarreto