scholarly journals Using data linkage innovation and collaboration to create a cross-sectoral data repository for Western Australia

2019 ◽  
Vol 4 (3) ◽  
Author(s):  
Anna Ferrante ◽  
James Boyd ◽  
Tom Eitelhuber ◽  
Sean Randall ◽  
Adrian Brown ◽  
...  
Keyword(s):  
Family Relationships ◽  
Child Protection ◽  
Policy Development ◽  
Data Linkage ◽  
Academic Research ◽  
Health Data ◽  
Data Repository ◽  
Social Investment ◽  
Design Elements ◽  
Linkage Model

Background/rationaleThe Western Australian (WA) government and the Centre for Data Linkage (CDL) at Curtin University are creating a large, de-identified researchable database – the Social Investment Data Resource (SIDR) – to support a key government initiative called Target 120 (T120). T120 delivers targeted early interventions to young offenders and their families to reduce the likelihood of re-offending. Main AimThe SIDR brings together de-identified data from across government to be used for actuarial assessment and social investment analytics to assess long-term costs and benefits of T120 interventions. MethodsSIDR adopts a distributed linkage model where linkage workload is shared between the Department of Health Data Linkage Branch who curate WA Data Linkage System (WADLS) and the CDL. Design elements of the model included a common spine (embedded into the infrastructure of both groups), methods for leveraging quality from WADLS, and inclusion of family relationships data from the WA Family Connections database. The linkage model uses a combination of traditional and privacy-preserving record linkage (PPRL) methods. PPRL does not require release of personal identifiers; instead, data is irreversibly hashed prior to release for probabilistic linkage. The resultant SIDR repository has been designed to be securely and strictly managed. Access is by authorised, approved users only. ResultsUse of a distributed linkage model, coupled with traditional and PPRL methods, is an innovative yet pragmatic way of delivering data linkage services to a large, cross-sectoral research project. PPRL methods enable inclusion of otherwise excluded datasets in the project. Sharing of workload harnesses linkage capacity and capabilities across the state. The SIDR includes health data, education records, justice, child protection, disability and housing data. ConclusionSIDR provides a resource for whole-of-government policy development, service evaluation, academic research and social investment analytics for T120 and beyond. The SIDR distributed linkage model has potential for adaptation and use elsewhere.

scholarly journals Cooperation and Innovation in Data Linkage Creates A Linked, Multi-Sectoral Data Repository for Western Australia – The SIDR Project

2020 ◽  
Vol 5 (5) ◽  
Author(s):  
Anna Ferrante ◽  
Tom Eitelhuber ◽  
Max Maller ◽  
Sean Randall ◽  
Adrian Brown ◽  
...  
Keyword(s):  
Family Relationships ◽  
Child Protection ◽  
Policy Development ◽  
Data Linkage ◽  
Academic Research ◽  
Data Repository ◽  
Social Investment ◽  
Data Resource ◽  
Design Elements ◽  
Linkage Model

IntroductionDuring 2019, the Western Australian (WA) government and Curtin University’s Centre for Data Linkage (CDL) created a large, de-identified researchable database – the Social Investment Data Resource (SIDR) – to support government in delivering targeted early interventions to young offenders and their families to reduce the likelihood of re-offending (the Target 120 program). Objectives and ApproachSIDR brings together administrative data from health, education, justice, child protection, disability and housing sectors. The linked, de-identified data provides an invaluable resource for actuarial assessment and social investment analytics to assess long-term costs and benefits of the Target 120 program. SIDR also provides an invaluable tool for academic research. SIDR adopted a distributed linkage model where linkage workload was shared between the Department of Health Data Linkage Branch who create and maintain the WA Data Linkage System (WADLS) and the CDL. Design elements of the model included a common spine (embedded into the infrastructure of both groups), methods for leveraging quality from WADLS, and inclusion of family relationships data from the WA Family Connections database. The linkage model within SIDR uses a combination of traditional and privacy-preserving record linkage (PPRL) methods. PPRL does not require release of personal identifiers; instead, data is irreversibly hashed prior to release for probabilistic linkage. ResultsThrough cooperation (distributed linkage) and innovation (a mix of traditional and PPRL linkage), the project has delivered a large, linked, cross-sectoral data resource for policymakers and researchers. Sharing of the linkage workload maximised the capacity and unique capabilities of each linkage unit. PPRL enabled ‘hard to get’ datasets from justice to be included. SIDR is being updated in 2020. Conclusion / ImplicationsSIDR provides a resource for whole-of-government policy development, service evaluation, academic research and social investment analytics for T120 and beyond. The SIDR linkage model has potential for adaptation and use elsewhere.

scholarly journals Providing A Person-Centred View: Applying Linked Data to Government Policy Reform and Service Design

2020 ◽  
Vol 5 (5) ◽  
Author(s):  
Sharon Williams ◽  
Kenneth Cheng ◽  
Mark Sipthorp
Keyword(s):  
Child Protection ◽  
Policy Development ◽  
Linked Data ◽  
Human Services ◽  
Data Linkage ◽  
Policy Reform ◽  
Service Design ◽  
Evidence Base ◽  
Demand Model ◽  
Health And Human Services

The application of linked data by government has limited visibility due to complexities in publishing details of the analysis and interventions. The Victorian Department of Health and Human Services (DHHS) acknowledges the value of linked data in the department’s strategic plan, and linked data has been used in many policy reform and service design activities over the past three years. IntroductionIn 2016 the Centre for Victorian Data Linkage (CVDL), located in DHHS, developed the Victorian Linkage Map (VLM) of 20 plus health and human services datasets linked with births and deaths data. The VLM has since been expanded to include education, justice and police data. DHHS has been an “early adopter” in applying linked data to policy development, service reforms and departmental operations to improve the health and wellbeing of the Victorian population. Objectives and ApproachThe presentation will provide an overview of multi-sector data linkage in Victoria, and the value of frequent collaborations between CVDL and DHHS staff in applying linked data to priority projects and reforms. It will consider the challenges of cross-jurisdictional linkage in Australia, highlighting initiatives which are expanding linked datasets available to DHHS. ResultsDHHS has undertaken a broad range of linked data projects which have provided an evidence base for departmental activities, including provision of hospital, housing, health surveillance and child protection services. Linked data has also been used to develop an integrated demand model, which forecasts impact of investment in one program area on other parts of the service system. Conclusion / ImplicationsThe active use of linked data by DHHS provides a model for other government departments to improve service design and delivery to vulnerable populations. DHSS is expanding linked-data use to additional areas, and further imbedding in departmental operations.

scholarly journals GAMS – An infrastructure for the long-term preservation and publication of research data from the Humanities

2018 ◽  
Vol 71 (1) ◽  
pp. 207-216 ◽  
Author(s):  
Johannes Hubert Stigler ◽  
Elisabeth Steiner
Keyword(s):  
System Architecture ◽  
Academic Research ◽  
Research Data ◽  
Data Repository ◽  
Data Repositories ◽  
Domain Specific ◽  
Preservation Policy ◽  
Long Term Preservation ◽  
Data Centres

Research data repositories and data centres are becoming more and more important as infrastructures in academic research. The article introduces the Humanities’ research data repository GAMS, starting with the system architecture to preservation policy and content policy. Challenges of data centres and repositories and the general and domain-specific approaches and solutions are outlined. Special emphasis lies on the sustainability and long-term perspective of such infrastructures, not only on the technical but above all on the organisational and financial level.

scholarly journals Linking child travel routes and routine health data

2017 ◽  
Vol 1 (1) ◽  
Author(s):  
Amy Mizen ◽  
Sarah Rodgers ◽  
Richard Fry ◽  
Ronan Lyons
Keyword(s):  
Large Scale ◽  
Data Linkage ◽  
Routine Data ◽  
Environmental Exposures ◽  
Health Data ◽  
Walking Distance ◽  
Complete Analysis ◽  
Natural Experiments ◽  
Older Children ◽  
Household Level

ABSTRACTObjectivesLinking routinely collected health and environment data can allow for large scale evaluations of how our environment impacts our health. Our data linkage approach advances previous research where residence-based environmental exposures were anonymously linked in the SAIL databank using Residential Anonymous Linking Fields (RALFs). The dose-response relationship between exposure to food and dietary intake has not been widely investigated. Previous research found conflicting views on whether increased environmental exposure to unhealthy food contributes to higher BMIs. This may have been due to different methodological approaches, including imprecise exposures, small numbers, and the use of self-reported BMIs. ApproachThis investigation calculated food exposure environments for routes from all homes to and from school. A Geographic Information System was used to calculate the environmental exposures along all potential routes up to a maximum age-appropriate walking distance from each school. Once within the SAIL databank we selected relevant routes using linked demographic and pupil datasets. To maintain privacy, the primary (doctoral) researcher generating the environmental exposures, did not have access to the final household-level exposure data in their identifiable form. The researcher automated their method so a second researcher could run the GIS analysis. Accuracy of modelled exposures will be compared with actual routes collected from GPS traces of children walking to school. ResultsRemoving access to the final identifiable household-level route exposures enabled the primary researcher to complete analysis on the combined household and individual-level data within the secure environment. The environmental exposures were linked with routine health data from the SAIL databank; including BMI as an indicator of obesity. BMI data for 4-5 year olds, and a sample of 1300 13-14 year olds were linked to associated environmental exposures. ConclusionDepending on modelled accuracy, a GIS and data linkage approach may allow the investigation of natural experiments and intervention evaluation at the scale of the total population. This is the first step towards anonymously modelling part of the daily exposure environment using routine data. A limitation is the lack of routinely collected BMI data for older children and teenagers an age when they are more likely to have the option to choose to buy food on the school route. This work will have many potential applications, including the delivery and evaluation of multiple school and workplace commuting interventions.

scholarly journals Planting the S.E.E.D.S of Indigenous Population Health Data Linkage

2020 ◽  
Vol 5 (5) ◽  
Author(s):  
Robyn K Rowe ◽  
Jennifer D Walker
Keyword(s):  
Population Health ◽  
Indigenous Peoples ◽  
Health Care Policy ◽  
Indigenous Population ◽  
Data Linkage ◽  
Indigenous Health ◽  
Population Data ◽  
Health Data ◽  
Indigenous Populations ◽  
Data Stewardship

IntroductionThe increasing accessibility of data through digitization and linkage has resulted in Indigenous and allied individuals, scholars, practitioners, and data users recognizing a need to advance ways that assert Indigenous sovereignty and governance within data environments. Advances are being talked about around the world for how Indigenous data is collected, used, stored, shared, linked, and analysed. Objectives and ApproachDuring the International Population Data Linkage Network Conference in September of 2018, two sessions were hosted and led by international collaborators that focused on regional Indigenous health data linkage. Notes, discussions, and artistic contributions gathered from the conference led to collaborative efforts to highlight the common approaches to Indigenous data linkage, as discussed internationally. This presentation will share the braided culmination of these discussions and offer S.E.E.D.S as a set of guiding Indigenous data linkage principles. ResultsS.E.E.D.S emerges as a living and expanding set of guiding principles that: 1) prioritizes Indigenous Peoples’ right to Self-determination; 2) makes space for Indigenous Peoples to Exercise sovereignty; 3) adheres to Ethical protocols; 4) acknowledges and respects Data stewardship and governance, and; 5) works to Support reconciliation between Indigenous Peoples and settler states. S.E.E.D.S aims to centre and advance Indigenous-driven population data linkage and research while weaving together common global approaches to Indigenous data linkage. Conclusion / ImplicationsEach of the five elements of S.E.E.D.S interweave and need to be enacted together to create a positive Indigenous data linkage environment. When implemented together, the primary goals of the S.E.E.D.S Principles is to guide positive Indigenous population health data linkage in an effort to create more meaningful research approaches through improved Indigenous-based research processes. The implementation of these principles can, in turn, lead to better measurements of health progress that are critical to enhancing health care policy and improving health and wellness outcomes for Indigenous populations.

scholarly journals Involving the Public in Data Linkage Research

2020 ◽  
Vol 5 (5) ◽  
Author(s):  
Mhairi Aitken ◽  
Annette Braunack-Mayer ◽  
Felicity Flack ◽  
Kimberlyn M McGrail ◽  
Michael Burgess ◽  
...  
Keyword(s):  
Public Engagement ◽  
Health Research ◽  
Consensus Statement ◽  
Data Linkage ◽  
Health Data ◽  
Advisory Council ◽  
Research Network ◽  
Plain Language ◽  
The Public ◽  
Data Intensive

Introduction“The Consensus Statement on Public Involvement and Engagement with Data-Intensive Health Research”, recent data breaches, and growing public awareness and controversy associated with secondary use of health data all highlight the need to understand what data sharing the public will support, under what circumstances, for what purposes and with whom. Objectives and ApproachThis symposium explores methods and findings from public engagement at all stages of data linkage research, beginning with short presentations (~6-8 minutes) on recent work: Mhairi Aitken: Consensus Statement - principles and an application using deliberative workshops to explore public expectations of public benefits from data-intensive health research Annette Braunack-Mayer/Felicity Flack: Surveys and citizens’ juries: Sharing government data with private industry Kim McGrail/Mike Burgess: Public deliberations on cross-sector data linkage, and combining public and private sources of data Alison Paprica: Plain language communication informed by Health Data Research Network Canada’s Public Advisory Council. Half the session will be spent interacting with the audience through live polling. The moderator will post a series of poll question such as “What is the most important thing for meaningful public engagement?” to prompt audience thinking on the topic. After the audience responses are revealed, panelists will share their own views about what they think is the best answer, and the main reason(s) behind their choice. The last 10-15 minutes of the session will be reserved for Q&A and dialogue with the audience. ResultsWe anticipate that this approach will surface emerging and tacit knowledge from presenters and the audience, and augment that through generative discussion. Conclusion / ImplicationsSession attendees will leave with a better understanding of the current state of knowledge and ways to talk about that understanding with other researchers, policy makers and the public.

scholarly journals Linked government administrative data: Public or Private?

2019 ◽  
Vol 4 (3) ◽  
Author(s):  
Joel Stafford
Keyword(s):  
Public Good ◽  
Communication Networks ◽  
Administrative Data ◽  
Public Service ◽  
Policy Development ◽  
Data Linkage ◽  
The Public ◽  
Government Services ◽  
Service Contracts ◽  
Public Data

Background with rationaleIt is commonplace in policy discussions concerning administrative data linkage to presuppose that the data referred to is government services data. But this is not always the case. Much of the data public services hold is now collected via intermediaries, such as Non-Government Organisations, operating under service contracts with one or multiple government departments. Nor are these the only administrative data holdings applicable to clients of government services. There are also vast private administrative data holdings – including utility data, and consumer behaviour data. Creating and amending legislation that governs public service practices in this domain is increasingly made complex when private companies partner with governments agencies on policy development and evaluation work. Understanding the concept of public data for public good in light of this expanded sense of administrative data opens the door to deeper questions about the role linked data can play in government decision making. Main aimThe paper problematizes how legislation governing the linking of government administrative data is scoped and discusses how public service work can be affected by the opaque communication networks that increasingly span the public-private sector divide. Methods/ApproachAfter contextualising the challenge of legislating for administrative data linkage in the current work of the Office of the National Data Commissioner (ONDC) in Australia, this paper tests aspects of the proposed legislation against the extent to which it permits the possibility of ‘data laundering’. ResultsThe presentation demonstrates the need for greater sophistication in the specification of data linkage and sharing legislation in service of the public good. Conclusions This paper indicates that contemporary practices governing the linkage of government administrative data holdings is porous to the aims of extra-governmental organisations and may benefit by better incorporating legislative structures that govern private analytical services entities.

scholarly journals Application of A Framework to Guide Policy on Healthcare Resource Allocation Decisions to Data Linkage Projects

2020 ◽  
Vol 5 (5) ◽  
Author(s):  
Ian Olver
Keyword(s):  
Resource Allocation ◽  
Data Linkage ◽  
Health Data ◽  
Decision Makers ◽  
Data Sets ◽  
Policy Decisions ◽  
The Public ◽  
Health Resource Allocation ◽  
Allocation Decisions ◽  
Resource Allocation Decisions

IntroductionData linkage of population data sets often across jurisdictions or linking health data sets or health data with non-health data often involves balancing ethical principles such as privacy with beneficence as represented by the public good. Similar ethical dilemmas occur in health resource allocation decisions. The NHMRC have published a framework to guide policy on health resource allocation decisions that could be applied to ensure the justification of data linkage projects that is defensible as in the interest of the public good. Objectives and ApproachThe four main conditions for legitimacy of policy decisions about access to healthcare in a democracy with a public health system and limited resources wereexamined for their relevance to decisions about the use of public data and linking data sets. ResultsPublic policy decisions must be defensible and responsive to the interests of those affected. Decision-makers should articulate their reasoning and recommendations so that citizens can judge them. While the context of policy decisions will differ, their legitimacy depends upon (1) the transparency of the reasoning which should be free from conflicts of interest, the basis for decisions recorded and report widely, (2) the accountability of the decision-makers to the wider community, (3) the testability of the evidence used to inform the decision-making, which usually means that it will stand up to independent review and(4) the inclusive recognition of those the decision affects which often requires that the implications for disadvantaged groups are considered, even if they can’t always be accommodated. These conditions are interrelated but ensure that the good of society in general and not just specific dominant groups are accommodated. Conclusion / ImplicationsIt these principles are applied to decisions about data linkage projects they have clear applicability in society accepting data linkage projects having balanced the good against the ethical risks involved.

scholarly journals Data Lakes and Data Visualization: An Innovative Approach to Addressing the Many Challenges of Health Workforce Planning

2015 ◽  
Vol 7 (3) ◽  
Author(s):  
Denise D. Krause
Keyword(s):  
Data Management ◽  
Data Visualization ◽  
Health Workforce ◽  
Health Planning ◽  
Workforce Planning ◽  
Health Data ◽  
Primary Objective ◽  
The State ◽  
Data Repository ◽  
Health Workforce Planning

Background: There are a variety of challenges to health workforce planning, but access to data is critical for effective evidence-based decision-making. Many agencies and organizations throughout Mississippi have been collecting quality health data for many years. Those data have historically resided in data silos and have not been readily shared. A strategy was developed to build and coordinate infrastructure, capacity, tools, and resources to facilitate health workforce and population health planning throughout the state.Objective: Realizing data as the foundation upon which to build, the primary objective was to develop the capacity to collect, store, maintain, visualize, and analyze data from a variety of disparate sources -- with the ultimate goal of improving access to health care.Specific aims were to:1)  build a centralized data repository and scalable informatics platform,2)  develop a data management solution for this platform and then,3)  derive value from this platform by facilitating data visualization and analysis.Methods: We designed and constructed a managed data lake for health data from disparate sources throughout the state of Mississippi. A data management application was developed to log and track all data sources, maps and geographies, and data marts.  With this informatics platform as a foundation, we use a variety of tools to visualize and analyze data.Results: Samples of data visualizations that aim to inform health planners and policymakers are presented. Many agencies and organizations throughout the state benefit from this platform.Conclusion: The overarching goal is that by providing timely, reliable information to stakeholders, Mississippians in general will experience improved access to quality care. 

scholarly journals Az igazságügyi gyermekvédelem fejlődése Finkeytől napjainkig

2021 ◽  
Vol 4 (1) ◽  
pp. 109-124
Author(s):  
Barbara Katalin Herke-Fábos
Keyword(s):  
Twentieth Century ◽  
Juvenile Offenders ◽  
Family Relationships ◽  
Child Protection ◽  
Administrative Law ◽  
Young Offenders ◽  
Financial Vulnerability ◽  
Political Ideologies ◽  
Procedural Law

Child protection in justice is designed to prevent crime among children and juveniles, to keep them away from further crime, and to reintegrate young offenders into society. So, it also covers the areas of prevention, enforcement, and aftercare. As early as the beginning of the twentieth century, it was recognized that child protection covers the elimination of a child’s financial vulnerability, the prevention of moral misconduct, and the representation of the interests of both orphans and the unhealthy. The country’s opportunities have been influenced not only by political ideologies but also by the human and material casualties suffered as a result of the two world wars. The current focus of child protection in justice is always on socio-economic and political problems. Examining the personality and family relationships of juvenile offenders also went a long way in the designated period. The protection of children in justice also affects the areas of administrative law, criminal substantive and procedural law, and criminology. At the end of the paper, I compare the institution of patronage and the preventive patronage.

Sign in / Sign up

Export Citation Format

Share Document