scholarly journals Perspectives on Linkage Involving Indigenous data

2018 ◽  
Vol 3 (4) ◽  
Author(s):  
Jennifer Walker ◽  
Bonnie Healy ◽  
Chyloe Healy ◽  
Tina Apsassin ◽  
William Wadsworth ◽  
...  
Keyword(s):  
Community Engagement ◽  
First Nations ◽  
Linked Data ◽  
Data Linkage ◽  
Indigenous Health ◽  
Health Centre ◽  
Population Data ◽  
Data Access ◽  
Indigenous Populations ◽  
Data Governance

Topic: Perspectives on Linkage Involving Indigenous dataIndigenous populations across the globe are reaffirming their sovereignty rights in the collection and use of Indigenous data. The Indigenous data sovereignty movement has been widely influential and can be unsettling for those who routinely use population-level linked data that include Indigenous identifiers. Ethical policies that stipulate community engagement for access, interpretation and dissemination of Indigenous data create an enabling environment through the critical process of negotiating and navigating data access in partnership with communities. This session will be designed to create space for leading Indigenous voices to set the tone for the discussion around Indigenous population data linkage. Objectives: To provide participants with an opportunity to build on the themes of Indigenous Data Sovereignty presented in the keynote session as they apply to diverse Indigenous populations. To explore approaches to the linkage of Indigenous-identified population data across four countries, including First Nations in three Canadian regions. To share practical applications of Indigenous data sovereignty on data linkage and analysis and discussion. To center Indigenous-driven data linkage and research. Facilitator:Jennifer Walker. Canada Research Chair in Indigenous Health, Laurentian University and Indigenous Lead, Institute for Clinical Evaluative Sciences. Collaborators: Alberta: Bonnie Healy, Tina Apsassin, Chyloe Healy and William Wadsworth (Alberta First Nations Information Governance Centre) Ontario: Carmen R. Jones (Chiefs of Ontario) and Jennifer Walker (Institute for Clinical Evaluative Sciences) British Columbia: Jeff Reading (Providence Health Centre) and Laurel Lemchuk-Favel (First Nations Health Authority) Australia: Raymond Lovett (Australian National University) Aotearoa / New Zealand: Donna Cormack (University of Otago) United States: Stephanie Rainie and Desi Rodriguez-Lonebear (University of Arizona) Session format: 90 minutesCollaborators will participate in a round-table introduction to the work they are doing. Collaborators will discuss the principles underlying their approaches to Indigenous data linkage as well as practical and concrete solutions to challenges. Questions to guide the discussion will be pre-determined by consensus among the collaborators and the themes will include: data governance, community engagement, Indigenous-led linkage and analysis of data, and decision-making regarding access to linked data. Other participants attending the session will be encouraged to listen and will have an opportunity to engage in the discussion and ask questions. Intended output or outcome:The key outcome of the session will be twofold. First, those actively working with Indigenous linked data will have an opportunity for an in-depth and meaningful dialogue about their work, which will promote international collaboration and sharing of ideas. Second, those with less experience and knowledge of the principles of Indigenous data sovereignty and their practical application will have an opportunity to listen to Indigenous people who are advancing the integration of Indigenous ways of knowing into data linkage and analysis. The output of the session will be a summary paper highlighting both the diversity and commonalities of approaches to Indigenous data linkage internationally. Areas where consensus exists, opportunities for collaboration, and challenges will be highlighted.

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 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 What do you mean by engagement? – evaluating the use of community engagement in the design and implementation of chronic disease-based interventions for Indigenous populations – scoping review

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Sahr Wali ◽  
Stefan Superina ◽  
Angela Mashford-Pringle ◽  
Heather Ross ◽  
Joseph A. Cafazzo
Keyword(s):  
Chronic Disease ◽  
Health Outcomes ◽  
Community Engagement ◽  
Participatory Research ◽  
Scoping Review ◽  
Indigenous Health ◽  
Well Being ◽  
Indigenous Populations ◽  
Local Context ◽  
Engagement Strategies

Abstract Background Indigenous populations have remained strong and resilient in maintaining their unique culture and values, despite centuries of colonial oppression. Unfortunately, a consequential result of facing years of adversity has led Indigenous populations to experience a disproportionate level of poorer health outcomes compared to non-Indigenous populations. Specifically, the rate of Indigenous chronic disease prevalence has significantly increased in the last decade. Many of the unique issues Indigenous populations experience are deeply rooted in their colonial history and the intergenerational traumas that has subsequently impacted their physical, mental, emotional and spiritual well-being. With this, to better improve Indigenous health outcomes, understanding the local context of their challenges is key. Studies have begun to use modes of community engagement to initiate Indigenous partnerships and design chronic disease-based interventions. However, with the lack of a methodological guideline regarding the appropriate level of community engagement to be used, there is concern that many interventions will continue to fall short in meeting community needs. Objective The objective of this study was to investigate the how various community engagement strategies have been used to design and/or implement interventions for Indigenous populations with chronic disease. Methods A scoping review guided by the methods outlined by Arksey and O’Malley was conducted. A comprehensive search was completed by two reviewers in five electronic databases using keywords related to community engagement, Indigenous health and chronic disease. Studies were reviewed using a descriptive-analytical narrative method and data was categorized into thematic groups reflective of the main findings. Results We identified 23 articles that met the criteria for this scoping review. The majority of the studies included the use a participatory research model and the procurement of study approval. However, despite the claimed use of participatory research methods, only 6 studies had involved community members to identify the area of priority and only five had utilized Indigenous interview styles to promote meaningful feedback. Adapting for the local cultural context and the inclusion of community outreach were identified as the key themes from this review. Conclusion Many studies have begun to adopt community engagement strategies to better meet the needs of Indigenous Peoples. With the lack of a clear guideline to approach Indigenous-based participatory research, we recommend that researchers focus on 1) building partnerships, 2) obtaining study approval and 3) adapting interventions to the local context.

scholarly journals Vasectomy reversal and prostate cancer risk: A multi-centre collaborative demonstration project of the Intentional Population Data Linkage Network

2018 ◽  
Vol 3 (1) ◽  
Author(s):  
James Boyd ◽  
Sean Randall ◽  
Emma Fuller
Keyword(s):  
Prostate Cancer ◽  
United Kingdom ◽  
Cancer Risk ◽  
Linked Data ◽  
Data Linkage ◽  
Prostate Cancer Risk ◽  
Population Data ◽  
Demonstration Project ◽  
The United Kingdom ◽  
Vasectomy Reversal

This first collaborative demonstration project of the International Population Data Linkage Network (IPDLN) has recently been completed. This project collated data from five data linkage centres across Australia, the United Kingdom and Canada to investigate the effect of vasectomy reversal on prostate cancer risk in vasectomized men. We discuss the study and the challenges of organising and analysing multi-centre linked data studies.

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 Symposium: Distributed Networks of Federated Secure Research Data Environments – Enabling Analytics Across Multiple Platforms

2020 ◽  
Vol 5 (5) ◽  
Author(s):  
Matthias Schneider
Keyword(s):  
Population Data ◽  
Data Access ◽  
Distributed Networks ◽  
Research Data ◽  
Data Governance ◽  
Virtual Database ◽  
South Wales ◽  
Challenges And Opportunities ◽  
Storage Location ◽  
Time Required

IntroductionUsers of linked data require access to an increasing number of heterogeneous datasets from diverse domains, often held in different secure research data environments, especially for multi-jurisdictional projects. Under the traditional model of data access, projects are required to transfer and harmonise the necessary datasets in one central location before analysis can be undertaken, increasing the time required for data acquisition and preparation. Objectives and ApproachIn a federated data environment, analysts query distributed datasets held in a network of multiple secure data environments via a central virtual database, without requiring the data to move. Instead, the data is analysed as close as possible to its storage location, minimising the amount of data transfers and giving data custodians more control over their data. This symposium explores the challenges and opportunities of establishing and operating a distributed network of federated secure research data environments. Leading organisations operating data platforms in various jurisdictions present for 15 minutes each the current capabilities of their platforms, the landscape of data environments in their jurisdictions and potential approaches to key questions such as: Harmonising/federating data sources Data security Data governance Discoverability/metadata Performance The audience is the then invited to participate in discussing the topic for the remaining 30 minutes. The following individuals have been approached to represent their organisations in this symposium: Professor David Ford, Swansea University: UK Secure eResearch Platform (UK SErP) Charles Victor, Institute for Clinical Evaluative Sciences (ICES): ICES Data & Analytic Virtual Environment (IDAVE) Professor Louisa Jorm, Centre for Big Data Research in Health, University of New South Wales: E-Research Institutional Cloud Architecture (ERICA) Professor Kimberlyn McGrail, Population Data BC: Secure Research Environment (SRE) Results / Conclusion / ImplicationsThis symposium will help formulate requirements for and barriers to distributed networks of federated secure research data environments, and create a foundation for data analytics across multiple platforms.

scholarly journals Regulating Statistics in the Age of Data Abundance

2019 ◽  
Vol 4 (3) ◽  
Author(s):  
Catherine Bromley
Keyword(s):  
Data Sharing ◽  
Data Linkage ◽  
Resource Constraints ◽  
Data Access ◽  
Data Governance ◽  
Code Of Practice ◽  
Regulatory Guidance ◽  
Use Of Data ◽  
Regulatory Approach ◽  
Major Review

Background with rationaleThe Office for Statistics Regulation is the UK’s independent regulator of official statistics produced by public sector bodies. The Code of Practice for Statistics sets out our expectations for statistics to be produced in a trustworthy way, be of high quality, and to serve the public good by informing answers to society’s important questions. We now live in a world of increasingly abundant data. Statistics producers need to adapt to this environment, and so do we as regulators. ApproachThe Code of Practice was updated in 2018 with new provisions to maximise the potential use of data for both citizens and organisations, and to make data available for wider reuse with appropriate safeguards. We have supplemented our commitment to these provisions with a review of data sharing and linking in government, new regulatory guidance on data governance, an increased focus on data access challenges (particularly users of English health data), and by putting data at the heart of our regulatory vision (published in summer 2019). These steps build on our existing work around admin data quality. OverviewThe National Statistician’s response to our data sharing and linkage review included many welcome commitments and a major review of data linkage methodology is now underway. A data linkage community is developing across government. However, we have raised concerns about ongoing difficulties with admin data sharing between departments, resource constraints, and the limited extent of public engagement about data sharing and use. ConclusionsOur regulatory approach to data is evolving and we are building new relationships with organisations with an interest in data beyond the statistics world. Our work to support users to access admin data may yet require more direct interventions to bring about the outcomes we desire. We are keen to share our experiences with admin data users.

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 Population Data Centre Profile: SA NT DataLink (South Australia and Northern Territory)

2019 ◽  
Vol 4 (2) ◽  
Author(s):  
Matthias Schneider ◽  
Christopher Gordon Radbone ◽  
Stacy Ann Vasquez ◽  
Miroslav Palfy ◽  
Andrew Kristjan Stanley
Keyword(s):  
Service Use ◽  
Data Linkage ◽  
South Australia ◽  
Population Data ◽  
Data Access ◽  
Ethics Committees ◽  
Data Repository ◽  
Strict Adherence ◽  
Clinical Registries ◽  
Human Research Ethics

ApproachUniquely governed by a broad range of consortium partners, SA NT DataLink’s business model operates with flexibility to adapt to researcher priorities and government requirements. Its Data Linkage Unit routinely links data from over 50 sources with more than 57 million records on approximately 2.9 million individuals. It arguably provides the broadest range of linked data sources in Australia, focusing on administrative datasets and clinical registries from various health and human services domains. Operating in strict adherence with the separation principal, SA NT DataLink’s Data Integration Unit separately manages anonymised clinical and service use data in collaboration with the respective data custodians through the Custodian Controlled Data Repository, allowing approved analysts to efficiently access high quality linked anonymised data. To protect individual privacy throughout the process of data linkage and data provision, SA NT DataLink’s processes align with state, territory and federal privacy legislations. Operating consistently with National Health and Medical Research Council guidelines, linkage projects are subject to approvals by the relevant data custodians and approved Human Research Ethics Committees. Noteworthy OutputsSA NT DataLink has provided linkage services to over 160 data linkage projects, informing nationally significant research and policy initiatives, including initiatives to improve indigenous children’s hearing and child development. ConclusionTo respond to a changing data linkage landscape, SA NT DataLink is continuously reviewing and improving its systems, linkage processes and governance, addressing administrative, funding, data access, social licence and data linkage challenges and opportunities to meet increasing demand and new business developments.

Innovative use of data sources: A Cross-sectional study of Data Linkage Practices across European Countries

2020 ◽  
Author(s):  
Romana Haneef ◽  
Marie Delnord ◽  
Michel Vernay ◽  
Emmanuelle Bauchet ◽  
Rita Gaidelyte ◽  
...  
Keyword(s):  
Public Health ◽  
Health Information ◽  
Linked Data ◽  
Public Health Surveillance ◽  
Data Linkage ◽  
Health Surveillance ◽  
European Countries ◽  
Data Sources ◽  
Data Governance ◽  
Use Of Data

Abstract Background The availability of data generated from different sources is increasing with the possibility to link these data sources together. However, linked administrative data can be complex to use and may require advanced expertise and skills in statistical analysis. The main objectives of this study were to describe the current use of data linkage at the individual level and the artificial intelligence (AI) in routine public health activities, and to identify the related health outcome and intervention indicators and determinants of health for non-communicable diseases. Method We performed a survey across European countries to explore the current practices applied by national institutes of public health and health information and statistics for innovative use of data sources (i.e., the use of data linkage and/or the AI). Results The use of data linkage and the AI at national institutes of public health and health information and statistics in Europe varies. The majority of European countries use data linkage in routine by applying a deterministic method or a combination of two types of linkages (i.e., deterministic & probabilistic) for public health surveillance and research purposes. The use of AI to estimate health indicators is not frequent at national institutes of public health and health information and statistics. Using linked data, 46 health outcome indicators related to seven health conditions, 34 indicators related to determinants and 23 to health interventions were estimated in routine. Complex data regulation laws, lack of human resources, skills and problems with data governance, were reported by European countries as obstacles to link different data sources in routine for public health surveillance and research. Conclusions Our results highlight that the majority of European countries have integrated data linkage in routine public health activities but a few use the AI. A sustainable national health information system and a robust data governance framework allowing to link different data sources are essential to support evidence-informed health policy development process. Building analytical capacity and awareness of the added value of data linkage in national institutes is necessary for improving the utilization of linked data in order to improve the monitoring of public health activities.

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