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 CARTA Fellows’ Scientific Contribution to the African Public and Population Health Research Agenda (2011 to 2018)

2020 ◽  
Author(s):  
Jude Igumbor ◽  
Edna N Bosire ◽  
Tariro Basera ◽  
Uwizeye Dieudonn ◽  
Funke Fayehun ◽  
...  
Keyword(s):  
Population Health ◽  
Health Research ◽  
Research Agenda ◽  
Neglected Tropical Diseases ◽  
Research Output ◽  
Research Training ◽  
Communicable Disease ◽  
Policy Research ◽  
Research Capacity ◽  
Priority Areas

Abstract Background: Strengthening research capacity in African academic institutions is crucial to address the ever-increasing health challenges across the continent. Since its inception in 2009, the Consortium for Advanced Research Training in Africa (CARTA) program has focused on strengthening the capacity of nine African universities to produce skilled researchers and scholars able to improve public and population health on the continent. This study describes the alignment between CARTA-supported doctoral topics and publications with the priorities articulated by the African public and population health research agenda and the Sustainable Development Goals’ (SDGs). Methods: We reviewed the output from CARTA PhD fellows between 2011 and 2018 to establish the volume and scope of the publications, and the degree to which the research focus coincided with the SDGs, World Bank, and African Development Bank research priority areas. We identified nine key priority areas into which the topics were classified.Results: In total, 140 CARTA fellows published 806 articles in peer-reviewed journals over the 8 years up to 2018. The publications are available in over 6300 online versions and have been cited in over 5500 other publications. About 69% of the published papers addressed the nine African public and population health research agenda and SDG priority areas. Infectious diseases topped the list of publications (26.8%), followed by the health system and policy research (17.6%), maternal and child health (14.7%), sexual and reproductive health (14.3%). About 70% of the articles were published by fellows from or affiliated to universities in Kenya, Nigeria, and South Africa. Conclusions and recommendations: Investments by CARTA in supporting doctoral studies provides fellows with sufficient training and skills to publish their research in fields of public and population health. The number of publications is understandably uneven across Africa’s public and population priority areas. However, even while low in number, fellows are nonetheless publishing in areas such as non-communicable disease, health financing, neglected tropical diseases, and environmental health. Violence and injury is perhaps underrepresented. There is need to keep developing research capacity in partner institutions with low research output by training more PhDs in such institutions and by facilitating enabling environments for research.

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 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.

scholarly journals CARTA Fellows’ Scientific Contribution to the African Public and Population Health Research Agenda (2011 to 2018)

2020 ◽  
Author(s):  
Jude Igumbor ◽  
Edna N Bosire ◽  
Tariro Basera ◽  
Uwizeye Dieudonn ◽  
Funke Fayehun ◽  
...  
Keyword(s):  
Population Health ◽  
Health Research ◽  
Research Agenda ◽  
Neglected Tropical Diseases ◽  
Research Output ◽  
Research Training ◽  
Communicable Disease ◽  
Policy Research ◽  
Health Financing ◽  
Priority Areas

Abstract Background: Since its inception in 2009, the Consortium for Advanced Research Training in Africa (CARTA) program has focused on strengthening the capacity of nine African universities and four research centres to produce skilled researchers and scholars able to improve public and population health on the continent. This study describes the alignment between CARTA-supported doctoral topics and publications with the priorities articulated by the African public and population health research agenda. Methods: We reviewed the output from CARTA PhD fellows between 2011 and 2018 to establish the volume and scope of the publications, and the degree to which the research focus coincided with the SDGs, World Bank, and African Development Bank research priority areas. We identified nine key priority areas into which the topics were classified.Results: In total, 140 CARTA fellows published 806 articles in peer-reviewed journals over the 8 years up to 2018. All the publications considered in this paper had authors affiliated with African universities, 90% of the publications had an African university first author and 41% of the papers have CARTA fellows as the first author. The publications are available in over 6300 online versions and have been cited in over 5500 other publications. About 69% of the published papers addressed the nine African public and population health research agenda and SDG priority areas. Infectious diseases topped the list of publications (26.8%), followed by the health system and policy research (17.6%), maternal and child health (14.7%), sexual and reproductive health (14.3%). Conclusions and recommendations: Investments by CARTA in supporting doctoral studies provides fellows with sufficient training and skills to publish their research in fields of public and population health. The number of publications is understandably uneven across Africa’s public and population priority areas. Even while low in number, fellows are publishing in areas such as non-communicable disease, health financing, neglected tropical diseases and environmental health. Violence and injury is perhaps underrepresented. There is need to keep developing research capacity in partner institutions with low research output by training more PhDs in such institutions and by facilitating enabling environments for research.

scholarly journals Guidance for researchers wanting to link NHS data using non-consent approaches: a thematic analysis of feedback from the Health Research Authority Confidentiality Advisory Group

2020 ◽  
Vol 5 (1) ◽  
Author(s):  
Lauren Cross ◽  
Lauren Emma Carson ◽  
Amelia Jewell ◽  
Margaret Heslin ◽  
David Osborn ◽  
...  
Keyword(s):  
Health Research ◽  
Linked Data ◽  
Public Involvement ◽  
Data Linkage ◽  
Patient And Public Involvement ◽  
Advisory Group ◽  
Health Records ◽  
Complex Process ◽  
Governance Challenges ◽  
Full Approval

IntroductionThe use of linked data and non-consent methodologies is a rapidly growing area of health research due to the increasing detail, availability and scope of routinely collected electronic health records data. However, gaining the necessary legal and governance approvals to undertake data linkage is a complex process in England. ObjectivesWe reflect on our own experience of establishing lawful basis for data linkage through Section 251 approval, with the intention to build a knowledgebase of practical advice for future applicants. MethodsThematic analysis was conducted on a corpus of Section 251 feedback reports from the NHS Health Research Authority Confidentiality Advisory Group. ResultsFour themes emerged from the feedback. These were: (a) Patient and Public Involvement, (b)~Establishing Rationale, (c) Data maintenance and contingency, and the need to gain (d) Further Permissions from external authorities prior to full approval. ConclusionsSecuring Section 251 approval poses ethical, practical and governance challenges. However, through a comprehensive, planned approach Section 251 approval is possible, enabling researchers to unlock the potential of linked data for the purposes of health research.

scholarly journals CARTA Fellows’ Scientific Contribution to the African Public and Population Health Research Agenda (2011 to 2018)

2020 ◽  
Author(s):  
Jude Igumbor ◽  
Edna N Bosire ◽  
Tariro Basera ◽  
Uwizeye Dieudonn ◽  
Funke Fayehun ◽  
...  
Keyword(s):  
Population Health ◽  
Health Research ◽  
Research Agenda ◽  
Neglected Tropical Diseases ◽  
Research Output ◽  
Research Training ◽  
Communicable Disease ◽  
Policy Research ◽  
Health Financing ◽  
Priority Areas

Abstract Background: Since its inception in 2009, the Consortium for Advanced Research Training in Africa (CARTA) program has focused on strengthening the capacity of nine African universities and four research centres to produce skilled researchers and scholars able to improve public and population health on the continent. This study describes the alignment between CARTA-supported doctoral topics and publications with the priorities articulated by the African public and population health research agenda. Methods: We reviewed the output from CARTA PhD fellows between 2011 and 2018 to establish the volume and scope of the publications, and the degree to which the research focus coincided with the SDGs, World Bank, and African Development Bank research priority areas. We identified nine key priority areas into which the topics were classified.Results: In total, 140 CARTA fellows published 806 articles in peer-reviewed journals over the 8 years up to 2018. All the publications considered in this paper had authors affiliated with African universities, 90% of the publications had an African university first author and 41% of the papers have CARTA fellows as the first author. The publications are available in over 6300 online versions and have been cited in over 5500 other publications. About 69% of the published papers addressed the nine African public and population health research agenda and SDG priority areas. Infectious diseases topped the list of publications (26.8%), followed by the health system and policy research (17.6%), maternal and child health (14.7%), sexual and reproductive health (14.3%). Conclusions: Investments by CARTA in supporting doctoral studies provides fellows with sufficient training and skills to publish their research in fields of public and population health. The number of publications is understandably uneven across Africa’s public and population priority areas. Even while low in number, fellows are publishing in areas such as non-communicable disease, health financing, neglected tropical diseases and environmental health. Violence and injury is perhaps underrepresented. There is need to keep developing research capacity in partner institutions with low research output by training more PhDs in such institutions and by facilitating enabling environments for research.

scholarly journals A National Approach to The Management of Multi-Jurisdictional Linked Data Projects in Australia

2020 ◽  
Vol 5 (5) ◽  
Author(s):  
Natalie Wray ◽  
Felicity Flack ◽  
Katie Irvine
Keyword(s):  
Linked Data ◽  
Service Use ◽  
Business Processes ◽  
Data Linkage ◽  
Primary Objective ◽  
Research Network ◽  
Application Form ◽  
Wide Range ◽  
National Approach ◽  
Multiple Jurisdictions

IntroductionThe 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. Australia, as a federated nation, has taken a national approach because: Australia’s population is mobile and there is significant cross border service use Commonwealth, state and territory government agencies collect and store their own data. The national data linkage infrastructure enables researchers to apply for access to routinely collected and linked administrative data from the Commonwealth, six states and two territories. The application and approvals has been described by researchers as a time-consuming and administratively burdensome process. Objectives and ApproachThe primary objective of this project was to improve coordination of the application and approval processes for researchers requesting linked data from multiple jurisdictions in Australia. The approach taken was to develop a single application form/online application system (OAS) and standardise the business processes for multi-jurisdictional research applications. ResultsThe PHRN OAS was launched in 2014. All jurisdictions agreed to use the system for multi-jurisdictional linked data projects and SA NT DataLink agreed to use the system for their single-jurisdictional projects. Each year since the PHRN OAS’s launch, both the total number of registered users and the number of submissions each year has increased. The majority oforganisations that lodge submissions are universities and medical research institutes. There has been a significant reduction in the time taken by data linkage units to issue quotes and the time taken to achieve all approvals for multi-jurisdictional projects since the introduction of the standardised business processes. Conclusion / ImplicationsThis paper demonstrates that despite the challenges and complexities associated with applying for linked data from multiple jurisdictions a coordinated application and approval approach can be achieved.

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