scholarly journals The Population Health Research Network - Population Data Centre Profile

2019 ◽  
Vol 4 (2) ◽  
Author(s):  
Felicity Flack ◽  
Merran Smith
Keyword(s):  
Population Health ◽  
Health Research ◽  
Data Linkage ◽  
Population Data ◽  
Data Access ◽  
Research Network ◽  
Data Centre ◽  
Wide Range ◽  
Unique Approach ◽  
Data Collections

The Population Health Research Network (PHRN) is an Australian data linkage infrastructure capable of securely and safely linking and integrating data collections from a wide range of sources. It is an example of a national data linkage infrastructure in a country with a federated system of government. This population data centre profile describes Australia’s unique approach to enabling access to linked data from single jurisdictions and from multiple jurisdictions. It covers the background to the establishment of the PHRN as well as information about how it operates today including operating models, governance, data, data linkage and data access. Some of the challenges of data linkage across jurisdictions are also discussed.

scholarly journals The impact of the Population Health Research Network on linked data research capacity in Australia

2017 ◽  
Vol 1 (1) ◽  
Author(s):  
Felicity Flack ◽  
Natalie Wray ◽  
Merran Smith
Keyword(s):  
Population Health ◽  
Health Research ◽  
Linked Data ◽  
Data Linkage ◽  
Research Capacity ◽  
Research Infrastructure ◽  
Research Network ◽  
Training And Education ◽  
Priority Areas ◽  
System A

ABSTRACTObjectivesIn 2009 Australian governments and academic institutions made a substantial investment to establish the Population Health Research Network (PHRN), a distributed research infrastructure network which provides Australian researchers with state-of-the-art data linkage facilities and services. The infrastructure operates on a collaborative, national, non-exclusive basis and enables Australian researchers to address key national and global challenges. We have conducted a review of the PHRN’s progress over the last 6 years in achieving its objectives of:1. increasing the data linkage research capacity in Australia2. enabling research in national priority areas. ApproachProgress with achieving the first objective was measured by comparing the data linkage facilities and services available in Australia in 2008-09 with those available in 2014-15. The following categories of services and facilities were used in the analysis: Linkage facilities Application, access and storage facilities Information, training and education Changes in usage of the data linkage infrastructure over the period 2008-09 to 2014-15 were measured. The second objective was achieved by using bibliometrics to assess academic impact, in the form of citations, of peer-reviewed publications which arose from use of the PHRN infrastructure. The topics of all of the publications were compared to health priority areas to determine the extent to which the infrastructure has been used to inform national priorities. ResultsThere has been a significant expansion of the data linkage facilities from a small number of jurisdictional data linkage units to a distributed network of data linkage units servicing researchers in every state and territory. A cross-jurisdictional data linkage capability has also been established as well as a national online data application system, a secure remote access laboratory and a secure file transfer system. A variety of information, training and education has been provided to stakeholders. The expansion of the facilities and services has seen usage of data linkage units triple since 2011-12. The number of peer-reviewed publications resulting from the use of the PHRN infrastructure has increased every year since 2011-12. There were 111 publications in 2014-15. Areas of high burden of disease in Australia, cancer, cardiovascular and endocrine diseases are highly represented in the publications. ConclusionThere has been a significant increase in data linkage research infrastructure in Australia from 2008-09 to 2014-15. This has resulted in an increase in both the number of research projects conducted using linked data and the number of related peer-reviewed publications.

scholarly journals Assessing and piloting interoperability for population health research

2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
F Estupiñán-Romero ◽  
J Gonzalez-García ◽  
E Bernal-Delgado
Keyword(s):  
Case Studies ◽  
Population Health ◽  
Health Research ◽  
Network Architecture ◽  
Digital Health ◽  
Data Extraction ◽  
Health Data ◽  
Research Network ◽  
Technical Solution ◽  
Privacy And Security

Abstract Issue/problem Interoperability is paramount when reusing health data from multiple data sources and becomes vital when the scope is cross-national. We aimed at piloting interoperability solutions building on three case studies relevant to population health research. Interoperability lies on four pillars; so: a) Legal frame (i.e., compliance with the GDPR, privacy- and security-by-design, and ethical standards); b) Organizational structure (e.g., availability and access to digital health data and governance of health information systems); c) Semantic developments (e.g., existence of metadata, availability of standards, data quality issues, coherence between data models and research purposes); and, d) Technical environment (e.g., how well documented are data processes, which are the dependencies linked to software components or alignment to standards). Results We have developed a federated research network architecture with 10 hubs each from a different country. This architecture has implied: a) the design of the data model that address the research questions; b) developing, distributing and deploying scripts for data extraction, transformation and analysis; and, c) retrieving the shared results for comparison or pooled meta-analysis. Lessons The development of a federated architecture for population health research is a technical solution that allows full compliance with interoperability pillars. The deployment of this type of solution where data remain in house under the governance and legal requirements of the data owners, and scripts for data extraction and analysis are shared across hubs, requires the implementation of capacity building measures. Key messages Population health research will benefit from the development of federated architectures that provide solutions to interoperability challenges. Case studies conducted within InfAct are providing valuable lessons to advance the design of a future pan-European research infrastructure.

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 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 3369 Assessment to Action: Engaging network member’s in identifying needs and directions of network improvement

2019 ◽  
Vol 3 (s1) ◽  
pp. 130-130
Author(s):  
Paul Estabrooks ◽  
LaKaija Johnson ◽  
Jolene Rohde ◽  
Carol Geary ◽  
Lani Zimmerman ◽  
...  
Keyword(s):  
Translational Research ◽  
Research Collaboration ◽  
Planning Process ◽  
Action Planning ◽  
Data Access ◽  
Database Design ◽  
Research Network ◽  
Recommendations For Action ◽  
Wide Range ◽  
Clinical And Translational Research

OBJECTIVES/SPECIFIC AIMS: To complete a needs assessment and action planning process that engaged clinical and translational research network members in identifying needs through survey feedback, characterizing the needs in small group sessions, and developing recommendations for action at the network’s annual scientific meeting. METHODS/STUDY POPULATION: The project included (1) a survey of 357 members across partner institutions from the Great Plains IDeA CTR Network, (2) 6 - 90 minute brainstorming sessions to characterize needs identified through survey assessment, and (3) 6 - 60 minute sessions to develop recommendations for network improvement based on the characterization activity. Approximately 75 members participated in the characterization and recommendation sessions. RESULTS/ANTICIPATED RESULTS: Seven areas of need from the survey were identified based upon the frequency of identification by network members (support to move research across the translational spectrum, database design and management, data access and sharing, data analysis, recruitment and retention of subjects, support for members who have submitted grants but were repeatedly unsuccessful, mentoring). Members indicated which characterization sessions they were interested in attending and based on the enrollment numbers needs related to unsuccessful grant submitters and mentoring were combined as were needs related to database design and data access-sharing. Sessions resulted in 8 inter-related recommendations for network action that included to (1) develop GP-CTR directory/registry of clinicians, researchers, system partners, that can be used to identify people that want to be involved in research partnerships or mentoring, (2) create a GP CTR Navigators Program to will provide support to network members throughout the collaborative research and grant preparation process, (3) identify and disseminate information about assets (funding, databases/registries) that exist amongst network partners that can be leveraged by member, (4) develop a searchable repository of evidence-based interventions for T3/T4 efforts, (5) review GP CTR supported professional development, and technological resource offerings and identify potential gaps, (6) facilitate opportunities for peer support/networking, (7) provide guidance to GP CTR network institutions looking to adopt policies that will support translational research collaboration, and (8) identify potential barriers to GP CTR network engagement (i.e., infrastructure, communication, marketing). DISCUSSION/SIGNIFICANCE OF IMPACT: This process allowed for a wide range of network members to contribute to actionable recommendations for CTR leadership to move into action and improve the scientific network’s ability to conduct clinical and translational research.

scholarly journals Population Data BC: Supporting population data science in British Columbia

2020 ◽  
Vol 4 (2) ◽  
Author(s):  
Tavinder Kaur Ark ◽  
Sarah Kesselring ◽  
Brent Hills ◽  
Kim McGrail
Keyword(s):  
Linked Data ◽  
Large Scale ◽  
Data Science ◽  
Data Linkage ◽  
Population Data ◽  
Cost Effective ◽  
Data Access ◽  
Well Being ◽  
Third Party ◽  
Individual Level

BackgroundPopulation Data BC (PopData) was established as a multi-university data and education resourceto support training and education, data linkage, and access to individual level, de-identified data forresearch in a wide variety of areas including human and community development and well-being. ApproachA combination of deterministic and probabilistic linkage is conducted based on the quality andavailability of identifiers for data linkage. PopData utilizes a harmonized data request and approvalprocess for data stewards and researchers to increase efficiency and ease of access to linked data.Researchers access linked data through a secure research environment (SRE) that is equipped witha wide variety of tools for analysis. The SRE also allows for ongoing management and control ofdata. PopData continues to expand its data holdings and to evolve its services as well as governanceand data access process. DiscussionPopData has provided efficient and cost-effective access to linked data sets for research. After twodecades of learning, future planned developments for the organization include, but are not limitedto, policies to facilitate programs of research, access to reusable datasets, evaluation and use of newdata linkage techniques such as privacy preserving record linkage (PPRL). ConclusionPopData continues to maintain and grow the number and type of data holdings available for research.Its existing models support a number of large-scale research projects and demonstrate the benefitsof having a third-party data linkage and provisioning center for research purposes. Building furtherconnections with existing data holders and governing bodies will be important to ensure ongoingaccess to data and changes in policy exist to facilitate access for researchers.

scholarly journals The International Population Data Linkage Network – Banff and Beyond

2018 ◽  
Vol 3 (4) ◽  
Author(s):  
William A Ghali ◽  
Michael J Schull
Keyword(s):  
Executive Committee ◽  
Data Science ◽  
Data Linkage ◽  
South Australia ◽  
Population Data ◽  
Governance Structure ◽  
Social Program ◽  
Research Network ◽  
Foundational Work ◽  
Poster Presentations

We write to you, here in the pages of the International Journal of Population Data Science, for the second time in our capacity of co-directors of the International Population Data Linkage Network (IPDLN – www.ipdln.org). Time has certainly passed quickly since our first communication, where we introduced ourselves, and discussed planned initiatives for our tenure as leads of the IPDLN. Our network’s scientific community is steadily growing and thriving in an era of heightened interest around all things ‘data’. Indeed, there is great enthusiasm for all initiatives that explore ways of harnessing information systems and multisource data to enhance collective knowledge of health matters so that better decisions can be made by governments, system planners, providers, and patients. Never before have such initiatives attracted more attention. It is in this context of heightened interest and relevance around IPDLN and its science that we prepare to convene in Banff, Alberta, Canada for the 5th biennial IPDLN Conference – September 11-14. The conference, to be held at the inspiring Banff Centre (www.banffcentre.ca), is almost sold out, with only limited space remaining for late registrants. A tremendous program has been created through the oversight of Scientific Program co-chairs, Drs. Astrid Guttman and Hude Quan. A compelling roster of plenary lectures from Drs. Diane Watson, Jennifer Walker, and Osmar Zaïane is eagerly anticipated, as are topical panel discussions, an entertaining Science Slam session, and a terrific social program. These sessions will be surrounded by rich scientific oral and poster presentations arising from the more than 450 scientific abstracts submitted for review. We are so pleased to see this vibrant scientific engagement from the IPDLN membership and students, and look forward to hosting all delegates in Banff. The Banff conference will also be the venue at which we announce the new Directorship of the IPDLN for the next two years (2019 and 2020). As co-directors, we engaged with a number of individuals and organizations with interest in leading the IPDLN. In the end, two compelling Directorship applications were submitted – one a joint bid from Australia’s Population Health Research Network and the South Australia Northern Territory DataLink, and the other from the US-based Actionable Intelligence for Social Policy. IPDLN members submitted votes on these strong leadership bids through an online voting process, and while the excellence and appeal of both bids was apparent in strong voter support for both, a winning bid has been confirmed, and it will (as mentioned) be announced at the upcoming September conference. As we look forward to the Banff meeting with great anticipation, we are compelled to acknowledge the growing IPDLN legacy created by past directors. We are particularly indebted to our immediate predecessor, Dr. David Ford, and his team at Swansea University. Their work in hosting the 2016 IPDLN conference has been an inspiration to us in the planning of this year’s conference, and their crucial and foundational work in creating an IT platform for the IPDLN website, the membership database, and the new International Journal for Population Data Science has brought the IPDLN to a new level of organizational sophistication. Over the last 18 months, our co-directorship teams from the Institute for Clinical Evaluative Sciences in Ontario and the O’Brien Institute for Public Health at the University of Calgary have built on the foundation established by prior directors to update/enhance the IPDLN website and membership database. The IPDLN has more members than ever before representing a greater number of countries, and we have a more formalized governance structure with the creation of an Executive Committee that will include immediate past-Directors in order to better ensure continuity. A new Executive Committee will be elected by the IPDLN membership following the Banff conference. The waiting is almost over and IPDLN 2018 is upon us! Our scientific domain has never had the prominence or level of anticipation that we currently see. And the IPDLN has grown in its size, vibrancy and scientific scope. The opportunities for us are boundless, and the timing of our upcoming conference could not be better. We are honoured, with our respective organizations, to have had this opportunity to serve as co-directors over the past two years, and look forward to seeing many of you very soon. For those of you who are unable to travel to Canada’s Rocky Mountains this year, we look forward to connecting with you at a later time in the IPDLN’s continuing upward journey.

scholarly journals Validating Synthetic Longitudinal Populations for evaluation of Population Data Linkage

2018 ◽  
Vol 3 (2) ◽  
Author(s):  
Tom Dalton ◽  
Graham Kirby ◽  
Alan Dearle ◽  
Özgür Akgün ◽  
Monique Mackenzie
Keyword(s):  
Data Linkage ◽  
Synthetic Data ◽  
Population Data ◽  
Data Sets ◽  
Population Statistics ◽  
Standard Data ◽  
Wide Range ◽  
Population Reconstruction ◽  
Potential Interactions ◽  
Linkage Evaluation

Background’Gold-standard’ data to evaluate linkage algorithms are rare. Synthetic data have the advantage that all the true links are known. In the domain of population reconstruction, the ability to synthesize populations on demand, with varying characteristics, allows a linkage approach to be evaluated across a wide range of data. We have implemented ValiPop, a microsimulation model, for this purpose. ApproachValiPop can create many varied populations based upon sets of desired population statistics, thus allowing linkage algorithms to be evaluated across many populations, rather than across a limited number of real world ’gold-standard’ data sets. Given the potential interactions between different desired population statistics, the creation of a population does not necessarily imply that all desired population statistics have been met. To address this we have developed a statistical approach to validate the adherence of created populations to the desired statistics, using a generalized linear model. This talk will discuss the benefits of synthetic data for data linkage evaluation, the approach to validating created populations, and present the results of some initial linkage experiments using our synthetic data.

Sign in / Sign up

Export Citation Format

Share Document