Perspectives on Linkage Involving Indigenous data

Abstract

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.

SEEDS of Indigenous Population Health Data Linkage

“…A qualitative, retrospective, manual document analysis of pre and post conference discussions, detailed notes, and artistic contributions that were created during the conference were compiled and thematically explored for commonalities. Grounded in an Indigenous methodology, the document analysis employed ongoing relational and conversational methods [23]. The final set of principles that emerged from this process were vetted through conference attendees, co-authors, and ID-Sov advocates over the course of two years.…”

“…This includes non-Indigenous groups respecting Indigenous data and research sovereignty while making the necessary space for Indigenous nations to lead research and exercise that sovereignty [4,6,13,24]. It recognizes that Indigenous data are sacred, cultural, and economic assets [23] requiring processes that are respectful of distinctive Indigenous-based protocols, engagement, collective and community ownership, and collective and community control over Indigenous information. Exercising data sovereignty acknowledges the diversity of Indigenous nations.…”

“…Ethical considerations should honour Indigenous data, including the ways that it is managed and linked, and should include ongoing processes of transparency motivated by doing good and doing no harm. As such, Indigenous-led discussions should foster relationships, respect, reciprocity, responsibility, and relevance [23] and also address future uses of linked IPH data including how data will be protected and used moving forward, and by whom.…”

“…This includes the integration of Indigenous-led mechanisms that enable the stewardship and governance of Indigenous data held by non-Indigenous governments, institutions, and agencies [2]. From this perspective, Indigenous data, regardless of where it resides in the world, must include processes that integrate applicable and Indigenous-accepted governance mechanisms or, be governed by appropriate Indigenous nations and used to further Indigenous governance [23]. This includes an understanding of any preexisting Indigenous data governance mechanisms.…”

“…International, critical, Indigenous-led advancements are transforming the ways that Indigenous data are collected, used, stored, shared, linked, and analyzed [5,[22][23][24][25]. The collective rights of Indigenous nations to autonomy and sovereignty are being advanced by Indigenous nations around the world in accordance with international human rights instruments such as the United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP) [4,[25][26][27][28][29].…”