scholarly journals Data linkage capabilities in Australia: practical issues identified by a Population Health Research Network ‘Proof of Concept project’

2015 ◽  
Vol 39 (4) ◽  
pp. 319-325 ◽  
Author(s):  
Rebecca J. Mitchell ◽  
Cate M. Cameron ◽  
Rod J. McClure ◽  
Ann M. Williamson
Keyword(s):  
Population Health ◽  
Health Research ◽  
Data Linkage ◽  
Research Network ◽  
Proof Of Concept

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 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.

5.K. Workshop: Innovative methods for population health research: lessons from the European Joint Action InfAct

2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
◽  
Keyword(s):  
Public Health ◽  
Artificial Intelligence ◽  
Health Information ◽  
Population Health ◽  
Health Research ◽  
Joint Action ◽  
Data Linkage ◽  
Health Surveillance ◽  
Data Sources ◽  
New Methods

Abstract Health information is essential to inform decision-makers, researchers and the public. The availability of health and non-health information generated from different sources is increasing. The possibility to link administrative data sources with other databases offers unique opportunity to answer research questions which, for example, require a large sample size or detailed data on hard-to-reach population. However, the linking of information from multiple data sources for population health surveillance and research can be complex and may require advanced expertise and skills in analyzing big data. Therefore, more efficient ways of linking and analyzing health information using big data across European countries are required. Nevertheless, the use of data linkage and the new technology such as artificial intelligence for data analysis across national public health institutes and health information and statistics offices across European countries varies. The Joint Action on Health Information (InfAct) aims to establish a solid infrastructure on EU health information through improving the availability of comparable, robust and policy-relevant health status data and health system performance information. In the area of innovation in health information, InfAct focuses on developing guidance and recommendations based on case studies in data linkage and analysis for population health research. The main objectives of this workshop are to share the experiences gained in using new methodological approaches for population health research, to highlight the underlying limitations and lessons learnt, and their implications for the facilitation of health policy processes. The workshop will begin with the latest developments in new methods for data analysis using artificial intelligence, followed by the presentation of potential uses of the hospital admissions/mortality ratio to assess the variability of non-communicable diseases within a country. Then, a java interactive tool to analyze industrial pollution for public health surveillance will be introduced, followed by an update on the development of a federated architecture for population health research that provides solutions to interoperability challenges. Finally, a new business model for health information in the age of digitalization will be presented. Interactive exchange with the delegates will facilitate knowledge and opinion exchange regarding new approaches in population health research, and support learning from the experiences of the Joint Action. A commentary will summarize the main discussion points, and be submitted to the European Journal of Public Health. Key messages The main outputs of the Joint Action InfAct will contribute to the development of new methods for population health research. The results will support knowledge exchange among EU Member States, and facilitate the adoption of good practices considering country context.

scholarly journals Cross-Center Virtual Education Fellowship Program for Early-Career Researchers in Atrial Fibrillation

2020 ◽  
Vol 13 (11) ◽  
Author(s):  
Tinuola B. Ajayi ◽  
Christy D. Remein ◽  
Randall S. Stafford ◽  
Angela Fagerlin ◽  
Mina K. Chung ◽  
...  
Keyword(s):  
Atrial Fibrillation ◽  
Population Health ◽  
Early Stage ◽  
Early Career ◽  
Research Network ◽  
Grant Writing ◽  
Career Stage ◽  
Fellowship Program ◽  
Pedagogical Model ◽  
Grant Applications

Background: It is estimated that over 46 million individuals have atrial fibrillation (AF) worldwide, and the incidence and prevalence of AF are increasing globally. There is an urgent need to accelerate the academic development of scientists possessing the skills to conduct innovative, collaborative AF research. Methods: We designed and implemented a virtual AF Strategically Focused Research Network Cross-Center Fellowship program to enhance the competencies of early-stage AF basic, clinical, and population health researchers through experiential education and mentorship. The pedagogical model involves significant cross-center collaboration to produce a curriculum focused on enhancing AF scientific competencies, fostering career/professional development, and cultivating grant writing skills. Outcomes for success involve clear expectations for fellows to produce manuscripts, presentations, and—for those at the appropriate career stage–grant applications. We evaluated the effectiveness of the fellowship model via mixed methods formative and summative surveys. Results: In 2 years of the fellowship, fellows generally achieved the productivity metrics sought by our pedagogical model, with outcomes for the 12 fellows including 50 AF-related manuscripts, 7 publications, 28 presentations, and 3 grant awards applications. Participant evaluations reported that the fellowship effectively met its educational objectives. All fellows reported medium to high satisfaction with the overall fellowship, webinar content and facilitation, staff communication and support, and program organization. Conclusions: The fellowship model represents an innovative educational strategy by providing a virtual AF training and mentoring curriculum for early-career basic, clinical, and population health scientists working across multiple institutions, which is particularly valuable in the pandemic era.

scholarly journals Conducting Population Health Research during the COVID-19 Pandemic: Impacts and Recommendations

2021 ◽  
Vol 13 (6) ◽  
pp. 3320
Author(s):  
Amy R. Villarosa ◽  
Lucie M. Ramjan ◽  
Della Maneze ◽  
Ajesh George
Keyword(s):  
Data Collection ◽  
Health Services ◽  
Data Quality ◽  
Population Health ◽  
Health Research ◽  
Alternative Methods ◽  
Residential Aged Care ◽  
Recruitment Methods ◽  
Face To Face ◽  
The Impact

The COVID-19 pandemic has resulted in many changes, including restrictions on indoor gatherings and visitation to residential aged care facilities, hospitals and certain communities. Coupled with potential restrictions imposed by health services and academic institutions, these changes may significantly impact the conduct of population health research. However, the continuance of population health research is beneficial for the provision of health services and sometimes imperative. This paper discusses the impact of COVID-19 restrictions on the conduct of population health research. This discussion unveils important ethical considerations, as well as potential impacts on recruitment methods, face-to-face data collection, data quality and validity. In addition, this paper explores potential recruitment and data collection methods that could replace face-to-face methods. The discussion is accompanied by reflections on the challenges experienced by the authors in their own research at an oral health service during the COVID-19 pandemic and alternative methods that were utilised in place of face-to-face methods. This paper concludes that, although COVID-19 presents challenges to the conduct of population health research, there is a range of alternative methods to face-to-face recruitment and data collection. These alternative methods should be considered in light of project aims to ensure data quality is not compromised.

Impact of cardiac rehabilitation on 3 year outcomes amongst patients after acute coronary syndrome: (ACS) SNAPSHOT ACS follow-up study

2020 ◽  
Vol 41 (Supplement_2) ◽  
Author(s):  
J Redfern ◽  
K Hyun ◽  
D Brieger ◽  
D Chew ◽  
J French ◽  
...  
Keyword(s):  
Acute Coronary Syndrome ◽  
Cardiac Rehabilitation ◽  
Data Linkage ◽  
Research Network ◽  
Funding Source ◽  
Cardiovascular Research ◽  
Coronary Syndrome ◽  
Follow Up Study ◽  
Significant Difference

Abstract Background Cardiovascular disease is the leading cause of disease burden globally. With advancements in medical and surgical care more people are surviving initial acute coronary syndrome (ACS) and are in need of secondary prevention and cardiac rehabilitation (CR). Increasing availability of high quality individual-level data linkage provides robust estimates of outcomes long-term. Purpose To compare 3 year outcomes amongst ACS survivors who did and did not participate in Australian CR programs. Methods SNAPSHOT ACS follow-up study included 1806 patients admitted to 232 hospitals who were followed-up by data linkage (cross-jurisdictional morbidity, national death index, Pharmaceutical Benefit Schedule) at 6 and 36 months to compare those who did/not attend CR. Results In total, the cohort had a mean age of 65.8 (13.4) years, 60% were male, only 25% (461/1806) attended CR. During index admission, attendees were more likely to have had PCI (39% v 14%, p<0.001), CABG (11% v 2%, p<0.001) and a diagnosis of STEMI (21% v 5%, p<0.001) than those who did not attend. However, there was no significant difference between CR attendees/non-attendees for risk factors (LDL-cholesterol, smoking, obesity). Only 19% of eligible women attended CR compared to 30% of men (p<0.001). At 36 months, there were fewer deaths amongst CR attendees (19/461, 4.1%) than non-attendees (116/1345, 8.6%) (p=0.001). CR attendees were more likely to have repeat ACS, PCI, CABG at both 6 and 36 months (Table). At 36 months, CR attendees were more likely to have been prescribed antiplatelets (78% v 53%, p<0.001), statins (91% 73%, p<0.001), beta-blockers (11% v 13%, p=0.002) and ACEI/ARBs (72% v 61%, p<0.001) than non-attendees. Conclusions Amongst Australian ACS survivors, participation in CR was associated with less likelihood of death and increased prescription of pharmacotherapy. However, attendance at CR was associated with higher rates of repeat ACS and revascularisation. Funding Acknowledgement Type of funding source: Foundation. Main funding source(s): New South Wales Cardiovascular Research Network, National Heart Foundation

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