scholarly journals Collaboration with First Nations Communities to Produce Tailored Community-Driven Results

2020 ◽  
Vol 5 (5) ◽  
Author(s):  
Graham Mecredy ◽  
Pam Naponse-Corbiere ◽  
Jennifer Walker
Keyword(s):  
First Nations ◽  
Population Health ◽  
Indigenous Health ◽  
Research Question ◽  
Health Data ◽  
Data Governance ◽  
Research Knowledge ◽  
Additional Tool ◽  
The Government ◽  
Health System Data

IntroductionWhile First Nations communities are well aware of the unique health challenges and requirements of their populations, research evidence is often needed to support this knowledge. First Nations communities face continual challenges accessing data pertaining to the health of their people that is held by the government or other organizations. Objectives and ApproachThrough the Applied Health Research Question (AHRQ) program at ICES, First Nations communities in Ontario, Canada, have an avenue to access vital population health information about their people. While keeping questions of privacy, data sovereignty, data governance, and the OCAP® principles at the forefront, First Nations partners are active members and collaborators on community driven projects that are of importance to their communities. An Indigenous health data training program has also been developed to run concurrently with these projects, to enhance research knowledge and capacity within partner First Nations communities. ResultsFirst Nations community partners are the main drivers in deciding and refining the research questions for their projects. They are engaged throughout the project process to ensure the production of results that suit the specific needs of the partners. Project results are only shared with the partners, who utilize and disseminate them as appropriate within their communities. Conclusion / ImplicationsWith access to previously difficult to access population health data sources, First Nations communities are able to use health system data as an additional tool to better plan and implement community health programs, to lobby for additional funding, and ultimately to contribute to positive policy change.

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.

A retrospective on reconciliation by design

2018 ◽  
Vol 32 (1) ◽  
pp. 15-19 ◽  
Author(s):  
Alika T. Lafontaine ◽  
Christopher J. Lafontaine
Keyword(s):  
First Nations ◽  
Indigenous Peoples ◽  
Indigenous Health ◽  
Transformational Change ◽  
Alternative Approach ◽  
Stakeholder Alignment ◽  
The Government ◽  
Government Of Canada ◽  
Multi Stakeholder ◽  
Thinking Tools

It is well-established that Indigenous Peoples continue to experience a lower level of health than non-Indigenous Peoples in Canada. For many health leaders, finding practical strategies to close the gap in health disparities remains elusive. In this retrospective study, we will illustrate our own experience of transformational change using design and systems thinking tools toward a primary outcome of multi-stakeholder alignment. Using this approach enabled three Indigenous Provincial/Territorial Organizations (IPTOs) representing more than 150 First Nations communities from Saskatchewan, Manitoba, and Ontario to establish the largest community-led, collaborative approach to health transformation in Canada at the time. These IPTOs have gone on to pursue some of the most ambitious health transformation initiatives in Canada and in September 2018, were granted $68 million in funding support by the Government of Canada. If health leaders are looking at an alternative approach to closing the gap in Indigenous health, alignment thinking has shown promising results.

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 Holistic Approach to Data Linkage at Monash University

2020 ◽  
Vol 5 (5) ◽  
Author(s):  
Nadine Andrew ◽  
Chris Mac Manus ◽  
Komathy Padmanabhan ◽  
Mark Lucas ◽  
Anitha Kannan
Keyword(s):  
Knowledge Sharing ◽  
Community Of Practice ◽  
Best Practice ◽  
Data Linkage ◽  
Health Data ◽  
Data Governance ◽  
Clinical Registry ◽  
Data Infrastructure ◽  
Research Activities ◽  
The Government

IntroductionMonash University’s health researchers are at the forefront of Health, Epidemiological and Translational research. Powered by research funding of over $69 million per year, Monash encompasses 13+ registries, 44+ clinical trials and 47+ cohort studies underpinned by complex multimodal, large and often sensitive datasets. Many of these research activities are occurring in isolation. Opportunities exist to better deliver higher impact research at scale through capacity building in data sharing. Objectives and ApproachWe have designed this session to demonstrate how significant investment in health data platform infrastructure by a University, can support best practice in data linkage and health research. ResultsContent will include: An overview of Helix – people as a platform, research stakeholders, and key capabilities. Institutional data governance and sharing capabilities – linking two or more researcher held datasets exampled by a use-case of linking biobank data to a clinical registry dataset. Monash Helix data linkage working group – established to develop a community of practice to advance data linkage capabilities across Monash with a focus on: knowledge sharing; ethics, governance and data security; analytic training; and improved access to external administrative datasets. Secure eResearch Platform (SeRP) – developed by Swansea University who have partnered with Monash University to bring their best practice framework and technologies in managing sensitive health data to Monash researchers and their national and international collaborators. Future directions - participation in defining the strategic priorities of the Health Studies National Data Asset Program by creating distributed data infrastructure capability to develop, share and link FAIR data collections from the government, research and health care sectors. Conclusion/ImplicationsThe session will facilitate discussions on how we can build on these activities, both nationally and internationally, to develop a community of practice around knowledge sharing and best practice in data linkage.

scholarly journals Overview: The international group for indigenous health measurement and COVID-19

2021 ◽  
pp. 1-6
Author(s):  
Michele Connolly ◽  
Kalinda Griffiths ◽  
John Waldon ◽  
Malcolm King ◽  
Alexandra King ◽  
...  
Keyword(s):  
New Zealand ◽  
Total Population ◽  
Indigenous Health ◽  
Health Data ◽  
Indigenous Populations ◽  
Health Measurement ◽  
Country Group ◽  
International Group ◽  
The Us ◽  
The Impact

The International Group for Indigenous Health Measurement (IGIHM) is a 4-country group established to promote improvements in the collection, analysis, interpretation and dissemination of Indigenous health data, including the impact of COVID-19. This overview provides data on cases and deaths for the total population as well as the Indigenous populations of each country. Brief summaries of the impact are provided for Canada and New Zealand. The Overview is followed by. separate articles with more detailed discussion of the COVID-19 experience in Australia and the US.

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 “Wars” on COVID-19 in Slovakia, Russia, and the United States: Securitized Framing and Reframing of Political and Media Communication Around the Pandemic

2020 ◽  
Vol 5 ◽  
Author(s):  
Marta N. Lukacovic
Keyword(s):  
United States ◽  
Social Media ◽  
Digital Media ◽  
Political Communication ◽  
Research Question ◽  
The United States ◽  
Frame Element ◽  
Political Factions ◽  
Russian Media ◽  
The Government

This study analyzes securitized discourses and counter narratives that surround the COVID-19 pandemic. Controversial cases of security related political communication, salient media enunciations, and social media reframing are explored through the theoretical lenses of securitization and cascading activation of framing in the contexts of Slovakia, Russia, and the United States. The first research question explores whether and how the frame element of moral evaluation factors into the conversations on the securitization of the pandemic. The analysis tracks the framing process through elite, media, and public levels of communication. The second research question focused on fairly controversial actors— “rogue actors” —such as individuals linked to far-leaning political factions or militias. The proliferation of digital media provides various actors with opportunities to join publicly visible conversations. The analysis demonstrates that the widely differing national contexts offer different trends and degrees in securitization of the pandemic during spring and summer of 2020. The studied rogue actors usually have something to say about the pandemic, and frequently make some reframing attempts based on idiosyncratic evaluations of how normatively appropriate is their government's “war” on COVID-19. In Slovakia, the rogue elite actors at first failed to have an impact but eventually managed to partially contest the dominant frame. Powerful Russian media influencers enjoy some conspiracy theories but prudently avoid direct challenges to the government's frame, and so far only marginal rogue actors openly advance dissenting frames. The polarized political and media environment in the US has shown to create a particularly fertile ground for rogue grassroots movements that utilize online platforms and social media, at times going as far as encouragement of violent acts to oppose the government and its pandemic response policy.

scholarly journals Estimating Health over Space and Time: A Review of Spatial Microsimulation Applied to Public Health

J ◽  
2021 ◽  
Vol 4 (2) ◽  
pp. 182-192
Author(s):  
Dianna M. Smith ◽  
Alison Heppenstall ◽  
Monique Campbell
Keyword(s):  
Population Health ◽  
Spatial Scales ◽  
Local Level ◽  
Health Data ◽  
Future Planning ◽  
Academic Researchers ◽  
Quality Health ◽  
Spatial Microsimulation ◽  
Dynamic Populations ◽  
Economic Studies

There is an ongoing demand for data on population health, for reasons of resource allocation, future planning and crucially to address inequalities in health between people and between populations. Although there are regular sources of data at coarse spatial scales, such as countries or large sub-national units such as states, there is often a lack of good quality health data at the local level. One method to develop reliable estimates of population health outcomes is spatial microsimulation, an approach that has its roots in economic studies. Here, we share a review of this method for estimating health in populations, explaining the different approaches available and examples where the method is applied successfully for creating both static and dynamic populations. Recent notable advances in the method that allow uncertainty to be represented are highlighted, along with the evolving approaches to validation that are an ongoing challenge in small-area estimation. The summary serves as a primer for academics new to the area of research as well as an overview for non-academic researchers who consider using these models for policy evaluations.

Missiological implications for Taylor Seminary arising from Canada’s Truth and Reconciliation Commission’s recommendations

2017 ◽  
Vol 45 (4) ◽  
pp. 407-413
Author(s):  
Allan Effa
Keyword(s):  
First Nations ◽  
Truth And Reconciliation Commission ◽  
Final Report ◽  
Cooperative Effort ◽  
Truth And Reconciliation ◽  
Cultural Genocide ◽  
The Government ◽  
Government Of Canada ◽  
Set Up

In 2015 the Truth and Reconciliation Commission of Canada concluded a six-year process of listening to the stories of Canada’s First Nations, Inuit and Métis peoples. More than 6000 witnesses came forth to share their personal experiences in listening sessions set up all across the country. These stories primarily revolved around their experience of abuse and cultural genocide through more than 100 years of Residential Schools, which were operated in a cooperative effort between churches and the government of Canada. The Commission’s Final Report includes 94 calls to action with paragraph #60 directed specifically to seminaries. This paper is a case study of how Taylor Seminary, in Edmonton, is seeking to engage with this directive. It explores the changes made in the curriculum, particularly in the teaching of missiology, and highlights some of the ways the seminary community is learning about aboriginal spirituality and the history and legacy of the missionary methods that have created conflict and pain in Canadian society.

scholarly journals Public Interest, Health Research and Data Protection Law: Establishing a Legitimate Trade-Off between Individual Control and Research Access to Health Data

Laws ◽  
2020 ◽  
Vol 9 (1) ◽  
pp. 6 ◽  
Author(s):  
Mark J. Taylor ◽  
Tess Whitton
Keyword(s):  
Public Interest ◽  
Data Protection ◽  
Health Research ◽  
Health Data ◽  
Personal Health ◽  
Positive Contribution ◽  
Data Governance ◽  
The Public ◽  
Individual Control ◽  
Data Protection Law

The United Kingdom’s Data Protection Act 2018 introduces a new public interest test applicable to the research processing of personal health data. The need for interpretation and application of this new safeguard creates a further opportunity to craft a health data governance landscape deserving of public trust and confidence. At the minimum, to constitute a positive contribution, the new test must be capable of distinguishing between instances of health research that are in the public interest, from those that are not, in a meaningful, predictable and reproducible manner. In this article, we derive from the literature on theories of public interest a concept of public interest capable of supporting such a test. Its application can defend the position under data protection law that allows a legal route through to processing personal health data for research purposes that does not require individual consent. However, its adoption would also entail that the public interest test in the 2018 Act could only be met if all practicable steps are taken to maximise preservation of individual control over the use of personal health data for research purposes. This would require that consent is sought where practicable and objection respected in almost all circumstances. Importantly, we suggest that an advantage of relying upon this concept of the public interest, to ground the test introduced by the 2018 Act, is that it may work to promote the social legitimacy of data protection legislation and the research processing that it authorises without individual consent (and occasionally in the face of explicit objection).

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