scholarly journals The Norwegian Twin Registry

2019 ◽  
Vol 22 (6) ◽  
pp. 647-650
Author(s):  
Thomas Nilsen ◽  
Ingunn Brandt ◽  
Jennifer R. Harris
Keyword(s):  
Record Linkage ◽  
Potential Benefit ◽  
Data Access ◽  
Health Data ◽  
Research Use ◽  
Twin Data ◽  
Physical And Mental Health ◽  
Twin Registry ◽  
Other Information ◽  
Data Collections

AbstractThe Norwegian Twin Registry (NTR) is maintained as a research resource that was compiled by merging several panels of twin data that were established for research into physical and mental health, wellbeing and development. NTR is a consent-based registry. Where possible, data that were collected in previous studies are curated for secondary research use. A particularly valuable potential benefit associated with the Norwegian twin data lies in the opportunities to expand and enhance the data through record linkage to nationwide registries that cover a wide array of health data and other information, including socioeconomic factors. This article provides a brief description of the current NTR sample and data collections, information about data access procedures and an overview of the national registries that can be linked to the NTR for research projects.

scholarly journals Accuracy of reporting of Aboriginality on administrative health data collections using linked data in NSW, Australia

2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Michael A. Nelson ◽  
Kim Lim ◽  
Jason Boyd ◽  
Damien Cordery ◽  
Allan Went ◽  
...  
Keyword(s):  
Record Linkage ◽  
Linked Data ◽  
Aboriginal People ◽  
Patient Survey ◽  
Health Data ◽  
Weight Of Evidence ◽  
Cross Sectional ◽  
Predictive Values ◽  
Administrative Health Data ◽  
Data Collections

Abstract Background Aboriginal people are under-reported on administrative health data in Australia. Various approaches have been used or proposed to improve reporting of Aboriginal people using linked records. This cross-sectional study used self-reported Aboriginality from the NSW Patient Survey Program (PSP) as a reference standard to assess the accuracy of reporting of Aboriginal people on NSW Admitted Patient (APDC) and Emergency Department Data Collections (EDDC), and compare the accuracy of selected approaches to enhance reporting Aboriginality using linked data. Methods Ten PSP surveys were linked to five administrative health data collections, including APDC, EDDC, perinatal, and birth and death registration records. Accuracy of reporting of Aboriginality was assessed using sensitivity, specificity, and positive and negative predictive values (PPVs and NPVs) and F score for the EDDC and APDC as baseline and four enhancement approaches using linked records: “Most recent linked record”, “Ever reported as Aboriginal”, and two approaches using a weight of evidence, “Enhanced Reporting of Aboriginality (ERA) algorithm” and “Multi-stage median (MSM)”. Results There was substantial under-reporting of Aboriginality on APDC and EDDC records (sensitivities 84 and 77% respectively) with PPVs of 95% on both data collections. Overall, specificities and NPVs were above 98%. Of people who were reported as Aboriginal on the PSP, 16% were not reported as Aboriginal on any of their linked records. Record linkage approaches generally increased sensitivity, accompanied by decrease in PPV with little change in overall F score for the APDC and an increase in F score for the EDDC. The “ERA algorithm” and “MSM” approaches provided the best overall accuracy. Conclusions Weight of evidence approaches are preferred when record linkage is used to improve reporting of Aboriginality on administrative health data collections. However, as a substantial number of Aboriginal people are not reported as Aboriginal on any of their linked records, improvements in reporting are incomplete and should be taken into account when interpreting results of any analyses. Enhancement of reporting of Aboriginality using record linkage should not replace efforts to improve recording of Aboriginal people at the point of data collection and addressing barriers to self-identification for Aboriginal people.

The Norwegian Twin Registry from a Public Health Perspective: A Research Update

2012 ◽  
Vol 16 (1) ◽  
pp. 285-295 ◽  
Author(s):  
Thomas S. Nilsen ◽  
Gun Peggy Knudsen ◽  
Kristina Gervin ◽  
Ingunn Brandt ◽  
Espen Røysamb ◽  
...  
Keyword(s):  
Public Health ◽  
Mental Health ◽  
Record Linkage ◽  
Twin Study ◽  
National Strategy ◽  
Twin Data ◽  
Public Health Perspective ◽  
Twin Research ◽  
Twin Registry ◽  
Large Program

We describe the importance of the Norwegian Twin Registry (NTR) for research in public health and provide examples from several programs of twin research at the Norwegian Institute of Public Health (NIPH), including the Nordic Twin Study of Cancer, our epigenetics platform, and our large program of research in mental health. The NTR has become an integral component of a national strategy for maximizing the research potential from Norwegian registries and biobank-based studies. The information provided herein builds upon and complements our recent report describing the establishment of the NTR and the cohorts comprising it. Although Norway has a long tradition in twin research, the centralization and administration of the twin data through a single register structure is fairly recent. The NTR was established in 2009 and currently includes 47,989 twins covering birth years 1895–1960 and 1967–1979; 31,440 of these twins have consented to participate in medical research (comprising 5,439 monozygotic pairs, 6,702 dizygotic same-sexed pairs, and 1,655 dizygotic opposite-sexed pairs). DNA from approximately 4,800 twins is banked at the NIPH biobank and new studies continuously add new data to the registry. The value of NTR data is greatly enhanced through record linkage possibilities offered by Norway's many nation-wide registries (medical, demographic, and socio-economic) and several studies are already taking advantage of these linkage opportunities for research.

scholarly journals Using linked administrative health data for palliative and end of life care research in Ireland: potential and challenges

2021 ◽  
Vol 4 ◽  
pp. 17
Author(s):  
Maria Kelly ◽  
Katie O'Brien ◽  
Ailish Hannigan
Keyword(s):  
Palliative Care ◽  
Health System ◽  
End Of Life ◽  
Data Protection ◽  
End Of Life Care ◽  
Data Access ◽  
Health Data ◽  
Life Care ◽  
Administrative Health Data ◽  
Data Collections

Background: This study aims to examine the potential of currently available administrative health data for palliative and end-of-life care (PEoLC) research in Ireland. Objectives include to i) identify administrative health data sources for PEoLC research ii) describe the challenges and opportunities of using these and iii) estimate  the impact of recent health system reforms and changes to data protection laws.  Methods: The 2017 Health Information and Quality Authority catalogue of health and social care datasets was cross-referenced with a recognised list of diseases with associated palliative care needs. Criteria to assess the datasets included population coverage, data collected, data dictionary and data model availability and mechanisms for data access. Results: Eight datasets with potential for PEoLC research were identified, including four disease registries, (cancer, cystic fibrosis, motor neurone and interstitial lung disease), death certificate data, hospital episode data, community prescription data and one national survey. The ad hoc development of the health system in Ireland has resulted in i) a fragmented information infrastructure resulting in gaps in data collections particularly in the primary and community care sector where much palliative care is delivered, ii) ill-defined data governance arrangements across service providers, many of whom are not part of the publically funded health service and iii) systemic and temporal issues that affect data quality. Initiatives to improve data collections include introduction of i) patient unique identifiers, ii) health entity identifiers and iii) integration of the eircode postcodes. Recently enacted general data protection and health research regulations will clarify legal and ethical requirements for data  use. Conclusions: With appropriate permissions, detailed knowledge of the datasets and good study design currently available administrative health data can be used for PEoLC research. Ongoing reform initiatives and recent changes to data privacy laws will facilitate future use of administrative health data for PEoLC research.

scholarly journals The Western Australian Twin Register: A Population-Based Register of Adult and Child Multiples

2006 ◽  
Vol 9 (6) ◽  
pp. 712-717 ◽  
Author(s):  
Jessica D. Y. Lee ◽  
Lyle J. Palmer
Keyword(s):  
Medical Research ◽  
Genetic Epidemiology ◽  
Record Linkage ◽  
Collaborative Research ◽  
Data Linkage ◽  
Population Based ◽  
Multiple Births ◽  
Efficient Management ◽  
Twin Registry ◽  
Western Australian

AbstractThe Western Australian Twin Register (WATR) was established in 1997 to study the health of all child multiples born in Western Australia (WA). The Register has until recently consisted of all multiples born in WA between 1980 and 1997. Using unique record linkage capacities available through the WA data linkage system, we have subsequently been able to identify all multiple births born in WA since 1974. New affiliations with the Australian Twin Registry and the WA Institute for Medical Research are further enabled by the use of the WA Genetic Epidemiology Resource — a high-end bioinformatics infrastructure that allows efficient management of health datasets and facilitates collaborative research capabilities. In addition to this infrastructure, funding provided by these institutions has allowed the extension of the WATR to include a greater number of WA multiples, including those born between 1974 and 1979, and from 1998 onwards. These resources are in the process of being enabled for national and international access.

scholarly journals Twenty Years of Data Linkage in The Australian Longitudinal Study on Women’s Health

2020 ◽  
Vol 5 (5) ◽  
Author(s):  
Colleen Loos ◽  
Gita Mishra ◽  
Annette Dobson ◽  
Leigh Tooth
Keyword(s):  
Longitudinal Study ◽  
Data Collection ◽  
Women’S Health ◽  
Women's Health ◽  
Linked Data ◽  
Data Linkage ◽  
Data Access ◽  
National Study ◽  
Australian Longitudinal Study ◽  
Data Collections

IntroductionLinked health record collections, when combined with large longitudinal surveys, are a rich research resource to inform policy development and clinical practice across multiple sectors. Objectives and ApproachThe Australian Longitudinal Study on Women’s Health (ALSWH) is a national study of over 57,000 women in four cohorts. Survey data collection commenced in 1996. Over the past 20 years, ALSWH has also established an extensive data linkage program. The aim of this poster is to provide an overview of ALSWH’s program of regularly up-dated linked data collections for use in parallel with on-going surveys, and to demonstrate how data are made widely available to research collaborators. ResultsALSWH surveys collect information on health conditions, ageing, reproductive characteristics, access to health services, lifestyle, and socio-demographic factors. Regularly updated linked national and state administrative data collections add information on health events, health outcomes, diagnoses, treatments, and patterns of service use. ALSWH’s national linked data collections, include Medicare Benefits Schedule, Pharmaceutical Benefits Scheme, the National Death Index, the Australian Cancer Database, and the National Aged Care Data Collection. State and Territory hospital collections include Admitted Patients, Emergency Department and Perinatal Data. There are also substudies, such as the Mothers and their Children’s Health Study (MatCH), which involves linkage to children’s educational records. ALSWH has an internal Data Access Committee along with systems and protocols to facilitate collaborative multi-sectoral research using de-identified linked data. Conclusion / ImplicationsAs a large scale Australian longitudinal multi-jurisdictional data linkage and sharing program, ALSWH is a useful model for anyone planning similar research.

scholarly journals Alberta's Data and Analytic Strategy: Leveraging Linked Data to Drive Innovation

2019 ◽  
Vol 4 (3) ◽  
Author(s):  
Larry Svenson
Keyword(s):  
Health System ◽  
Health Information ◽  
Data Warehouse ◽  
Data Access ◽  
Health Data ◽  
Direct Access ◽  
Safe Haven ◽  
For Profit ◽  
Secondary Use ◽  
Not For Profit

BackgroundThe Province of Alberta, Canada, maintains a mature data environment with linkable administrative and clinical data dating back up to 30 years. Alberta has a single payer, publicly funded and administered, universal health system, which maintains multiple administrative data sets. Main AimThe main aim of the strategy is to fully maximize the data assets in the province to drive health system health system innovation, with a focus on improving health outcomes and quality of life. Methods/ApproachThe Alberta Ministry of Health has created the Secondary Use Data Access (SUDA) initiative to leverage its administrative health data. SUDA envisions strengthening partnerships between the public and private sectors through two main data access approaches. The first is direct access to de-identified data held within the Alberta Health data warehouse by key health system stakeholders (e.g. academic institutions, professional associations, regulatory colleges). The second is indirect access to private and not-for-profit organizations, using a data access safe haven (DASH) approach. Indirect access is achieved through private sector investments to a trusted third party that hires analysts placed within the Ministry of Health offices. ResultsStaffing agreements and privacy impact assessments are in place. Indirect access includes a multiple stakeholder steering committee to vet and prioritize projects. Private and not-for-profit stakeholders do not have access to raw data, but rather receive access to aggregated data and statistical models. All data disclosures are done by Ministry staff to ensure compliance with Alberta's Health Information Act. Direct access has been established for one professional organization and one academic institution, with access restricted to de-identified data. ConclusionThe Secondary Use Data Access initiative uses a safe haven approach to leveraging data to provide a more secure approach to data access. It reduces the need to provision data outside of the data warehouse while improving timely access to data. The approach provides assurances that people's health information is held secure, while also being used to create health system improvements.

scholarly journals British Columbia’s Health Data Platform: Unleashing the Power of a Data Environment Commons for Health and Health System Improvement

2020 ◽  
Vol 5 (5) ◽  
Author(s):  
Shirley Wong ◽  
Victoria Schuckel ◽  
Simon Thompson ◽  
David Ford ◽  
Ronan Lyons ◽  
...  
Keyword(s):  
Health Sector ◽  
Data Access ◽  
Health Data ◽  
Decision Makers ◽  
Security And Privacy ◽  
Privacy And Security ◽  
Data Accessibility ◽  
Data Platform ◽  
Access To Data ◽  
Data Consumer

IntroductionThere is no power for change greater than a community discovering what it cares about.1 The Health Data Platform (HDP) will democratize British Columbia’s (population of approximately 4.6 million) health sector data by creating common enabling infrastructure that supports cross-organization analytics and research used by both decision makers and cademics. HDP will provide streamlined, proportionate processes that provide timelier access to data with increased transparency for the data consumer and provide shared data related services that elevate best practices by enabling consistency across data contributors, while maintaining continued stewardship of their data. HDP will be built in collaboration with Swansea University following an agile pragmatic approach starting with a minimum viable product. Objectives and ApproachBuild a data sharing environment that harnesses the data and the understanding and expertise about health data across academe, decision makers, and clinicians in the province by: Enabling a common harmonized approach across the sector on: Data stewardship Data access Data security and privacy Data management Data standards To: Enhance data consumer data access experience Increase process consistency and transparency Reduce burden of liberating data from a data source Build trust in the data and what it is telling us and therefore the decisions made Increase data accessibility safely and responsibly Working within the jurisdiction’s existing legislation, the Five Safes Privacy and Security Framework will be implemented, tailored to address the requirements of data contributors. ResultsThe minimum viable product will provide the necessary enabling infrastructure including governance to enable timelier access, safely to administrative data to a limited set of data consumers. The MVP will be expanded with another release planned for early 2021. Conclusion / ImplicationsCollaboration with Swansea University has enabled BC to accelerate its journey to increasing timelier access to data, safely and increasing the maturity of analytics by creating the enabling infrastructure that promotes collaboration and sharing of data and data approaches. 1 Margaret Wheatley

Improving Data Quality in Health Care

2010 ◽  
pp. 1877-1881
Author(s):  
Karolyn Kerr ◽  
Tony Norris
Keyword(s):  
Health Care ◽  
New Zealand ◽  
Data Quality ◽  
Good Practice ◽  
Health Data ◽  
Strategic Approach ◽  
The Right ◽  
Data Collections ◽  
And Control ◽  
Care Demands

The increasingly information intensive nature of health care demands a proactive and strategic approach to data quality to ensure the right information is available to the right person at the right time in the right format. The approach must also encompass the rights of the patient to have their health data protected and used in an ethical way. This article describes the principles to establish good practice and overcome practical barriers that define and control data quality in health data collections and the mechanisms and frameworks that can be developed to achieve and sustain quality. The experience of a national health data quality project in New Zealand is used to illustrate the issues.

Improving Data Quality in Health Care

2011 ◽  
pp. 218-225 ◽  
Author(s):  
Karolyn Kerr ◽  
Tony Norris
Keyword(s):  
Health Care ◽  
New Zealand ◽  
Data Quality ◽  
Good Practice ◽  
Health Data ◽  
Strategic Approach ◽  
The Right ◽  
Data Collections ◽  
And Control ◽  
Care Demands

The increasingly information intensive nature of health care demands a proactive and strategic approach to data quality to ensure the right information is available to the right person at the right time in the right format. The approach must also encompass the rights of the patient to have their health data protected and used in an ethical way. This article describes the principles to establish good practice and overcome practical barriers that define and control data quality in health data collections and the mechanisms and frameworks that can be developed to achieve and sustain quality. The experience of a national health data quality project in New Zealand is used to illustrate the issues.

Sign in / Sign up

Export Citation Format

Share Document