International Data Linkage sites
International Population Data Linkage Network
The International Population Data Linkage Network (IPDLN) facilitates communication between centres that specialise in data linkage and users of the linked data. The producers and users alike are committed to the systematic application of data linkage to produce community benefit in the health and health-related domains. Over 30 participants from Canada, the UK, Australia and New Zealand attended the 2008 inaugural meeting of the IPDLN, held in London, UK and hosted by the Research and Development Directorate of the National Health Service. The IPDLN now boasts over 220 members.
Every two years, directorship of the Network moves sites. From January 2015 David Ford, Professor at Swansea University and Deputy Director of Farr Institute @ CIPHER, is the Director of the International Population Data Linkage Network (IPDLN).
Pan-Canadian Real-world Health Data Network
Senior representatives from centres across Canada are working together as Consortium Lead to develop a Pan-Canadian Real-world Health Data Network (PRHDN). Currently in Canada, data linkage research infrastructure only supports multi-province research. The PRHDN is taking the lead to develop infrastructure which supports pan-Canadian data linkage research.
Alberta Centre for Child, Family and Community Research, The Child and Youth Data Lab (CYDL)
The CYDL links anonymized government administrative data across ministries to better understand the life trajectories of children and youth and the impact of policy decisions. The CYDL is facilitated and managed by the Alberta Centre for Child, Family and Community Research (The Centre). The Centre is a not-for-profit corporation that endeavors to support the development of evidence that is relevant to government's current and emerging information needs. The Centre also concentrates on developing continuums of evidence that build on its thematic research priorities. Gap analyses are routinely conducted on existing collections of research evidence to identify key areas or questions that require further investigation.
Population Data BC
Population Data BC is a multi-university, data linkage and education resource facilitating interdisciplinary research on the determinants of human health, well-being and development. It has three main university partners, the University of British Columbia, the University of Victoria and Simon Fraser University.
The aim of Population Data BC is to provide researchers with access to linkable data from a range of sources such as health, education, early childhood development, workplace and the environment and the training required to conduct research that improves understanding of human health, well-being and development.
The Institute for Clinical Evaluative Sciences (ICES)
The Institute for Clinical Evaluative Sciences (ICES) is an independent, non-profit corporation and registered charity, whose main purpose is to conduct research that contributes to the effectiveness, quality, equity and efficiency of health care and health services in Ontario. In order to do this it maintains a database of health and population data. ICES houses a broad range of population-based data collections covering a number of areas.
Manitoba Centre for Health Policy
The Manitoba Centre for Health Policy (MCHP) is a research unit in the University of Manitoba's Faculty of Medicine. MCHP's purpose it to conduct research on the health of the people of Manitoba. In order to do this it maintains a de-identified database of health, education and human services data.
Under the Statistics Act, Statistics Canada is required to "collect, compile, analyse, abstract and publish statistical information relating to the commercial, industrial, financial, social, economic and general activities and conditions of the people of Canada."
The Farr Institute for Health Informatics Research
Funded by the Medical Research Council (MRC), the Farr Institute of Health Informatics Research is a distributed research institute providing physical and electronic infrastructure to support the work of four research centres with expertise in health informatics. The Farr Institute will facilitate sharing of datasets and adoption of common standards to enable the centres to undertake cutting-edge research and develop e-health applications.
Information Services Division
The Information Services Division is a division of National Services Scotland, part of NHS Scotland. The Scottish Health Information Service (SHIS) and the Scottish Health Information Service for Research (SHIS-R) are parts of ISD. The role of SHIS is to enable Scottish Health Boards to perform research and analysis using the NHS Corporate Data Warehouse and the ISD data marts. SHIS also has a Record Linkage Team which links nationally held data to other datasets.
Health Information Research Unit - Secure Anonymised Information Linkage Databank (SAIL)
The Health Information Research Unit (HIRU) was established by the College of Medicine, University of Swansea and is funded by the Welsh National Institute of Social Care and Health Research. The aim of HIRU is to realise the potential of electronically held, person based, routinely collected information for the purposes of conducting and supporting health related research. HIRU has established the Secure Anonymised Information Linkage (SAIL) system which has two main parts, a linkage function and an anonymised databank (data repository).
Scottish Health Informatics Program
The Scottish Health Informatics Programme (SHIP) is a Scotland-wide research platform for the collation, management, dissemination and analysis of anonymised electronic patient records. It is a collaboration between NHS Scotland and a number of academic partners. It is also an interdisciplinary collaboration which covers areas including health research, privacy and confidentiality, law and public engagement.
UK Data Service
The UK Data Service (UKDS) is a comprehensive resource funded by the ESRC to support researchers, teachers and policymakers who depend on high-quality social and economic data. UKDS provides secure access to data that are too detailed, sensitive or confidential to be made available under the standard End User Licence or Special Licence.
UKDS provides a single point of access to a wide range of secondary data including large-scale government surveys, international macrodata, business microdata, qualitative studies and census data from 1971 to 2011. Researchers access data remotely from their institutional desktop or in the UKDS Safe Centre.
UKDS provides extensive support, training and guidance to meet the needs of data users and data custodians. The UKDS security philosophy is based upon training and trust, leading-edge technology, licensing and legal frameworks, and strict security policies and penalties.
Administrative Data Liaison Service
The Administrative Data Liaison Service (ADLS) is funded by the Economic and Social Research Council (ESRC) to support administrative data based research in the UK. They provide an advisory service, safe researcher training courses and an online bank to store methodology and codes for future research purposes.
The ADLS library holds comprehensive information and documentation on administrative datasets in the UK, including how to make applications for data and their conditions of use.
German Record Linkage Center
The German Record Linkage Center (GermanRLC) was established in 2011 to promote research on record linkage and to facilitate practical applications in Germany. The Center provides several services related to record linkage applications as well as conduct research on central topics of the field.