Integrating Indigenous Data Sovereignty Principles Into Learning Health Systems: Survey of Canadian PBRLNs and Framework Analysis

Abstract

PURPOSE

We sought to describe the current state of data governance principles in Canadian practice-based research and learning networks (PBRLNs) and to examine opportunities and challenges in applying Indigenous data sovereignty frameworks.

METHODS

We conducted a cross-sectional survey of Canadian PBRLN leaders. Survey results were described using summary statistics and directed content analysis of open-text responses. Indigenous data sovereignty frameworks were identified through a scan of recent publications. We identified and synthesized the main principles presented in each framework and assessed their relevance to PBRLNs.

RESULTS

Eleven of 15 Canadian PBRLN leaders participated in the survey. The respondents noted several activities to be important for Indigenous data sovereignty: building knowledge of Indigenous data sovereignty within PBRLNs, having resources specifically dedicated to advance Indigenous data sovereignty, and understanding ways in which PBRLNs can advance this sovereignty. We identified 9 frameworks addressing Indigenous data sovereignty. Common principles among the frameworks were fostering relationships; ensuring collective benefits and action; respecting Indigenous ways of knowing and space for co-learning; prioritizing relevance to communities and places; ensuring data governance; building capacity; and striving for ethical sustainability.

CONCLUSIONS

Our survey suggests that improving knowledge of Indigenous data sovereignty within PBRLNs is a necessary step in Canada. We identified a set of principles in Indigenous data sovereignty frameworks that should be applied in PBRLNs. Networks and learning health systems need to adopt “wise practices” that focus on place-based and relational learning to advance Indigenous reconciliation.

INTRODUCTION

In Canada, practice-based research and learning networks (PBRLNs) have overcome some of the systemic barriers to improved health data by using participatory system learning, whereby varied interest-holders collaborate to study and improve the health systems in which they work.^1-6 These networks include clinicians, researchers, administrators, and analysts who access deidentified electronic health record (EHR) data to answer pertinent primary care research questions. PBRLNs are situated within community health practices, outside of tertiary care and traditional academic institutions, which promotes a responsiveness to local needs rather than a sole focus on investigator-driven interests.^7,8

A collaboratively developed data governance strategy—specifically, a competency-based, regional health information stewardship council—has been offered as a main strategy to overhaul the currently fragmented and inefficient health data ecosystem.¹ To date, PBRLNs have focused internally on extracting and managing data, achieving minimum data sets, creating disease registries, and supporting clinical research and quality improvement.^3,9 PBRLNs are obvious candidates to lead regional data governance discussions: these networks include multiple primary care organizations, and many network members have relationships of trust with community leaders and government decision makers, and through government investments, are active participants in the development of a new, national structure for primary care information.⁶ For regional PBRLNs to lead local data governance, they must shift or realign their priorities and operational plans to be inclusive of First Nations, Inuit, and Métis health care networks and communities in their jurisdiction (their “place”). To make progress on reconciliation with Indigenous peoples, individual PBRLNs and the structures that they participate in have ethical, moral, and legal accountabilities to the Truth and Reconciliation Committee’s Calls to Action, especially when it comes to (Indigenous) data, knowing, and learning.^1,10-13 Consequently, PBRLN data governance must include Indigenous data governance principles to support a vision of Indigenous data sovereignty—the fundamental rights of Nations to use data for their autonomous governance.¹⁴

The purposes of this study were to (1) learn from successful implementations of Indigenous data sovereignty principles; (2) elicit perspectives from PBRLN leaders on how they approach data governance and community engagement principles locally; (3) understand principles for PBRLNs to advance Indigenous data sovereignty; and (4) examine practical opportunities for PBRLNs to apply these recommendations. Note that we use the term Indigenous to refer to the collective and diverse groups and Nations that include constitutionally recognized Indigenous Peoples. The Canadian constitution recognizes 3 categories of Indigenous peoples: First Nations, Inuit, and Métis.

METHODS

Overview

Using a cross-sectional survey and critical scan of published literature, we examined what principles of data sovereignty are most pertinent to PBRLNs at this time and how PBRLNs can apply these principles practically. Of note, surveys and scans are not Indigenous methodologies.¹⁵ We relied on relationships and our experiences in community-based research to guide our analysis through team meetings, committee meetings, and conversations with Indigenous and nonIndigenous communities and health system leaders. We did not elicit the perspectives of members from Indigenous communities as part of this research because our goal was to produce clear recommendations for PBRLN leaders to prepare for ethical and meaningful engagement as a next step.^16,17 Research ethics approval was received for this project from the Lakehead University Research Ethics Board (File number 1468979).

Research Team

Our research team included Northern Ontario PBRLN leads B.Z. (a settler rural generalist physician whose team was the first to join the PBRLN) and B.W. (a settler epidemiologist), who acknowledged a need for enhanced engagement with neighboring First Nations communities from the outset. The opt-out nature of patient consent—a necessary feature of successful primary health care Canadian PBRLNs^3,18—seems to stand at odds with Indigenous data sovereignty principles. There are examples where Indigenous people and communities hold decision-making power in centralized institutions that collect and analyze (health) data,^19-21 although they are not found in the PBRLN context to date. D.M. (an Indigenous anthropologist) joined the team, bringing experience, expertise, and interest in Indigenous self-determination and the history of Indigenous health. R.D., S.M., R.O’L., and M.K. identified as settler researchers, bringing experience in quantitative and qualitative research, Indigenous learning, and critical approaches to health and religion, respectively. Throughout this work, we examined our individual ways of knowing, being, and doing,²² and how these might hold tension with how our organizations, the PBRLNs, and broader health systems operate.

Cross-Sectional Survey of Canadian PBRLNs

We invited the leaders of Canadian primary care PBRLNs to participate in a cross-sectional survey. Participants completed a 15-minute online questionnaire that was developed in Qualtrics (Silver Lake Technology Management, LLC) using previously published survey questions,²³ the recommendations for developing a PBRLN,²⁴ and Indigenous data governance principles that were highlighted in our critical scan of frameworks (described subsequently).^14,25 We collected data pertaining to PBRLN characteristics; variation among PBRLNs in terms of goals, structures, and approaches; operational governance (referring to processes, standards, rules, and practices that an organization follows that guide operations, administration, and more); and data governance (referring to the structures and processes to ensure high-quality data exist across the data lifecycle such as extraction, management, use, security). We also collected data pertaining to concepts and principles related to the PBRLN’s Indigenous data governance and community engagement. Participants were invited to upload relevant policy, process, or framework documents that described their PBRLN’s operational and/or governance structures.

Primary care PBRLN directors or network leaders were eligible to participate in this study, responding on behalf of their network. Initial invitations to participate were e-mailed to the 15 Canadian PBRLN directors in December 2020 who were part of the Canadian Primary Care Sentinel Surveillance Network. We presented a project overview to the directors/leaders before survey administration. Two e-mail reminders were issued before we closed the survey in February 2021.

Structured survey questions (eg, multiple choice, checkbox, Likert scale) were analyzed descriptively using frequencies and proportions. Open-text responses and documents were analyzed using directed content analysis²⁶—a deductive qualitative analysis that aims to extend a framework or theory—to understand how PBRLN processes and perspectives related to operational and data governance, specifically, to Indigenous data sovereignty principles. We generated an initial codebook using concepts from the scan of frameworks, including the CARE (collective benefit, authority to control, responsibility, ethics) principles of Indigenous data sovereignty,²⁵ to guide coding. New codes (ie, concepts and meanings) were added and described in the codebook during the analysis. Given the small sample size, we did not disaggregate our findings. Findings were organized and reported based on the survey responses and the document analysis, respectively.

Critical Review and Scan of Frameworks

We used several approaches to identify frameworks that communicated guiding principles and recommendations for Indigenous data governance and sovereignty. First, we reviewed recent and essential papers on Indigenous data sovereignty principles relevant to the Canadian context, including the CARE principles²⁵ and a chapter from a book published in 2020 that described Indigenous data governance and sovereignty in the Canadian policy context.¹⁴ Reference lists were searched to identify additional Indigenous data governance and sovereignty documents. Other frameworks were identified through engagement with communities and health system leaders, committee participation, and survey participants. Frameworks were examined further if they mentioned actions specific to data or knowledge management, with a particular focus on routinely collected health data in Canada. We used an iterative approach to learn from the frameworks by identifying goals for PBRLNs at the regional, provincial, and national level, while considering the survey responses and overarching thematic framework of PBRLN structures.^8,9

RESULTS

Participant Characteristics

Eleven of the 15 PBRLN leaders completed the online questionnaire. Six participants were from central Canada, 3 were from western Canada, and 1 was from eastern Canada (1 had an “other” location). Table 1 describes the characteristics of the respondents’ home PBRLNs. Six PBRLNs indicated that they had operational governance policies/processes in place, while 8 indicated that they had data governance policies/processes in place. One participant reported that their PBRLN applied Indigenous data sovereignty principles, whereas 2 indicated that their PBRLN did not; the remaining participants were unsure.

Table 1.

Characteristics of Participating PBRLNs (N = 11)

Characteristic	PBRLNs, No.
Years of operation
>10	7
6-10	2
1-3	2
Number of practices contributing to network
>30	3
20-30	1
10-19	5
5-9	1
<5	1
Number of active practitioners contributing to network
>100	5
75-99	1
50-74	3
25-49	2
Has associated family medicine residency sites in network
Yes	9
Do not know	2
Common positions in the networka
Director	10
Physician lead	3
Data manager	8
Data analyst	6
Project manager	6
Research coordinator	6
Other	6
Has operational governance policies/processes in place	6
Has data governance policies/processes in place	8
Applies Indigenous data sovereignty principles
Definitely yes	1
Definitely no	2
Probably yes, might or might not, probably not	8
Provided governance documents for analysis	7

PBRLN = practice-based research and learning network.

^aPertains to network, not to respondent. Head counts, not necessarily full-time equivalents.

Stakeholder Engagement and PBRLN Opportunities

Participants indicated that their PBRLNs regularly engaged researchers, research staff, and data-contributing clinicians in their network activities, including strategic and operational activities, data-generating activities (eg, research and/or quality improvement), and knowledge translation activities (eg, writing manuscripts) (Table 2). External stakeholders were less frequently included in these activities, however, with no PBRLNs regularly engaging Indigenous leaders, community members, or knowledge holders.

Table 2.

PBRLNs’ Regular Engagement of Diverse Stakeholder Groups in Network Activities

Stakeholder group	No. of PBRLNs engaging stakeholder groupa
	Strategic and operational activities	Data-generating activities	Knowledge translation activities
Affiliated researchers and staff	11	10	11
External researchers	6	7	10
Participating clinicians	10	10	7
External clinicians	2	5	5
Patients	6	1	4
Community organizations/health system	5	4	6
Indigenous leaders, community members, knowledge holders	0	0	0

PBRLN = practice-based research and learning network.

^aOut of the 11 participating PBRLNs.

In open-ended responses, respondents noted 4 opportunities for PBRLNs to honor Indigenous data sovereignty: (1) making connections with Indigenous leaders and their communities, and Indigenous physicians and researchers who are within the geography of the PBRLN practices; (2) understanding the Indigenous patient populations who might be part of the PBRLN; (3) working with Indigenous leaders, communities, and scholars to integrate priorities into PBRLN strategy (eg, equity, diversity, inclusion aims) or operations (eg, decision making); and (4) building knowledge, awareness, and internal capacity related to Indigenous data and knowledge sovereignty.

Operational Governance and/or Data Governance Documents

Seven PBRLNs shared their operational and/or data governance documents, which we subjected to directed content analysis. The information in these policy/process documents varied by format, level of detail, and complexity across PBRLNs. Mapping concepts from these documents to the Indigenous data sovereignty principles (ie, CARE principles) was challenging as most of the PBRLN documents used different terminology, and the intended meaning of certain concepts (eg, “relevant”) was not always fully articulated.

The concepts most frequently captured in the 7 PBRLNs’ operational and data governance documents were those related to authority to control and ethics, usually concepts such as informed consent, access to data, and (data) security. None of the documents explicitly mentioned individual or collective Indigenous data or processes related to their data governance (authority to control), and most of the ethics concepts were tied to traditional research ethics processes. For example, common elements among the PBRLN documents included processes around informed consent (5 documents), data sharing and linkage (5 documents), access to data via project intake and secure platforms (4 documents), confidentiality among personnel (5 documents), and research ethics boards/approval (4 documents). Concepts related to collective benefit and responsibility were less clearly noted and usually considered as part of “project intake” processes.

Most PBRLN decisions around use of data considered projects that were “timely/relevant/valuable” (4 documents), were “efficient/[had] reasonable costs” (3 documents), and were “feasible” (2 documents), according to committees composed of academics and clinicians. Three PBRLN documents recommended including patient and/or community voices in committees or review. Additional concepts that were identified in these documents included fee structures (2 documents), the role of pharmaceutical companies (2 documents), and medical learner participation (1 document).

Frameworks Addressing Indigenous Data Governance and Sovereignty

We identified 9 published frameworks across 12 citations that communicated guiding principles and recommendations for Indigenous data governance and sovereignty (Table 3).^11,25,27-36 Of note, there is substantial work in this area—led by Indigenous scholars, community leaders, and knowledge holders/keepers—that is published, and considerable work that is not. Because our search was limited to academic publications, our findings do not reflect the unique learnings and contributions from other knowledge sources.

Table 3.

Nine Frameworks Addressing Indigenous Data Governance and Sovereignty That are Relevant to the PBRLN Context

Framework	Description and objective	Key elements
CARE principles25	Principles that specify concerns related to the people and purpose of “data”	Collective benefit—inclusive development and innovation, improved governance and citizen engagement, and equitable outcomes that are grounded in community values Authority to control—recognizing rights and interests, making data (available) for governance, and developing protocols for the governance of data Responsibility—for positive relationships, for expanding capability and capacity, and by providing data development resources for Indigenous languages and worldviews Ethics—for minimizing harm and maximizing benefit, for justice, and for future use
OCAP(A) guidelines11,27	Guidelines that outline how data should be governed in First Nations communities	Ownership—First Nations individuals and communities own their cultural data, knowledge, and information, individually and collectively Control—First Nations individuals and communities have the power to make decisions about something and decide what should happen with their data and knowledge Access—the right or opportunity to use the data and information in a way that they determine Possession—responsible planning and management and physical control of resources Action (a recent adaptation from Mulder et al27)—emphasizes that research that aligns with OCAP principles needs to also promote community action and uptake of findings
Framework for Research Engagement With First Nation, Metis, and Inuit Peoples28	A framework that outlines how the University of Manitoba can partner with First Nations, Inuit, and Metis people to collaboratively lead respectful, world-class research that will achieve outcomes of value to both the university and participating communities	The framework specifies authentic relationship building and engagement, and research practice as 2 important areas for action. Using their guiding principles around shared authority and accountability, and developing mechanisms for formal oversight of research engagement, the authors reference data governance and ethical research frameworks. Of note, the Manitoba Métis Federation subscribes to the OCAS principles: Ownership—the legal possession of something Control—the power to make decisions about something and decide what should happen Access—the right or opportunity to use something that will bring benefits Stewardship—includes responsible planning and management of resources There is responsibility to the Métis people to ensure that research that is completed is in their best interests, will result in positive changes in Métis health and health service delivery, and is done in as rigorous and ethical a manner as possible.
The Four (Six) Rs29,30	Principles for academic institutions to more effectively meet the needs of First Nations students and communities	Respect—who you are as individuals, families, communities and Nations Relevance—research and education must be in accordance with a First Nations worldview, respecting community diversity Reciprocity—exchange or interchange of knowledge or bidirectional storytelling Responsibility—an exercise of sovereignty and responsibility over one’s own life Relationship—kinship and accountability with land, nature, ancestors, community, and future generations Representation—participation and representation in research and decision making
Inuit Qaujimajatuqangit31	A set of laws and principles that describe how Indigenous (Inuit) knowledge supports personal and cultural well-being, through finding balance and harmony	Four laws: Working for the common good Respecting all living things Maintaining harmony and balance Continually planning and preparing for the future Six guiding principles: Pijitsirniq—serving Aajiiqatigiingniq—consensus decision making Pilimmaksarniq—skills and knowledge acquisition Piliriqatigiingniq—collaborative relationships or working together for a common purpose Avatimik Kamattiarniq—environmental stewardship Qanuqtuurunnarniq—being resourceful to solve problems
USAI Research Framework: Utility Self-voicing Access Inter-relationality32	A trauma-informed research framework that intends to guide research practices, partnerships, and projects in which the OFIFC participates	Research projects and activities (in partnership with OFIFC) are guided by 4 ethical principles: Utility—research needs are based on community priorities Self-voicing—research, knowledge, and practice are authored by communities that are fully recognized as knowledge creators and knowledge keepers Access—research fully recognizes all local knowledge, practice, and experience in all their cultural manifestations as accessible by all research authors and knowledge keepers Inter-relationality—research is historically situated, geopolitically positioned, relational, and explicit about the perspective from which knowledge is generated
ICES framework33,34	An overall framework for working with Indigenous data, particularly routinely collected administrative health data	Four guiding principles inform development and strengthening of partnerships, content of agreements, and strategic and operational directions of ICES portfolios: Ethical relationships—Indigenous research ethics, community engagement, mutual capacity building Data governance—formalized data governance and data sharing agreements privacy legislation Methodology and approaches—Indigenous perspectives and models of well-being, data gaps/quality, context, linkage and analytics Evidence to build policies and programs—collaborative research projects, service model/requests from community
British Columbia First Nations Data Governance Initiative35	Recommendations formed for specific communities to implement in developing their data governance capacity	Nation-based privacy and data governance capacity—includes data governance and privacy frameworks, nation-based implementation, compliancy, legislative gap analysis Data standards—data dictionaries, implementation plan, adoption Nation-based electronic information management capacity—cEMR deployment Service change and service redesign
SEEDS framework36	Principles and approaches for linking Indigenous population health data	Self-determination—prioritize Indigenous peoples’ right to self-determination Exercise sovereignty—make space for Indigenous peoples to exercise sovereignty Ethical protocols—adhere to ethical protocols Data stewardship and governance—acknowledge and respect data stewardship and governance Support reconciliation—work to support reconciliation between Indigenous nations and settler states

CARE = collective benefit, authority to control, responsibility, ethics; cEMR = community electronic medical record; ICES = Institute for Clinical Evaluative Sciences; OCAP(A) = ownership, control, access, possession (action); OCAS = ownership, control, access, stewardship; OFIFC = Ontario Federation of Indigenous Friendship Centres; PBRLN = practice-based research and learning network; SEEDS = self-determination, exercise sovereignty, ethical protocols, data stewardship and governance, support reconciliation; USAI = utility, self-voicing, access, interrelationality.

Note: Indigenous data sovereignty refers to the fundamental rights of Nations to use data for their autonomous governance.

Framework authors emphasized that PBRLNs are not exempt from the obligation to uphold Indigenous data and knowledge governance,^14,25 despite confusion or ignorance around which Indigenous data are captured in EHRs. Indigenous identity and direct Indigenous identifiers are rarely captured in patient health records, and proxy approaches based on geographic residence are biased forms of identification.¹⁴ PBRLNs in Canada are likely to have Indigenous patients within their data repositories, and some might already include Indigenous practitioners, organizations, and/or entire communities.

Principles for Supporting Indigenous Data Governance

On detailed analysis of the frameworks, we identified 7 categories of principles that PBRLNs could adopt to support Indigenous data governance through their operational and data governance processes: fostering relationships; ensuring collective benefits and action; respecting Indigenous ways of knowing and space for co-learning; prioritizing relevance to communities and places; ensuring data governance; building capacity; and striving for ethical sustainability (Table 4). These principles are not mutually exclusive—implementing one principle (eg, relationships) often creates space to advance another (eg, relevance to communities and places).

Table 4.

Indigenous Data Sovereignty Principles and Their Incorporation Into the PBRLN Context

Principle	How principle is presented in different frameworks	How principle can be incorporated into a PBRLN
Fostering relationships: Learning happens through relationships between people, communities, the land, and environments.	Responsibility, ownership, respect, relationship, reciprocity, Piliriqatigiingniq, Avatimik Kamattiarniq, interrelationality, ethical relationships, ethical protocols, support reconciliation	PBRLNs can identify Indigenous communities and organizations that provide or access primary care across their practices.
Ensuring collective benefits and action: Learning must be tied to action that directly benefits communities, to support the sovereignty of Nations and advance reconciliation.	Collective benefit, control, action, responsibility, representation, Pijitsirniq, Piliriqatigiingniq, utility, evidence to build policy and programs, self-determination, exercise sovereignty, support reconciliation	PBRLN learning activities can support Indigenous communities’ and organizations’ access to additional resources for in-community health care.
Respecting Indigenous ways of knowing and space for co-learning: Different methodologies are used to create new and relevant information, given appropriate space in decision making.	Responsibility, ownership, respect, relevance, reciprocity, Aajiiqatigiingniq, Qanuqtuurunnarniq, self-voicing, interrelationality, methodology and approaches	PBRLN activities and staff can include scholars who use different methodologies (eg, storytelling) in addition to performing EHR analyses.
Prioritizing relevance to communities and places: Learning must prioritize questions and ideas that the communities voice, with explicit connections to places where the work is happening.	Community benefit, control, access, relevance, Piliriqatigiingniq, Avatimik, Kamattiarniq, utility, ethical relationships, evidence to build policy and programs, Nation-based electronic information management system	PBRLNs can ensure that Indigenous communities and organizations have representation in deciding how and which learning activities are prioritized.
Ensuring data governance: Physical and technical specifications give Indigenous individuals and communities autonomy over when and how they advance learning and what they advance.	Authority to control, control, access, possession, stewardship, reciprocity, Qanuqtuurunnarniq, data governance, privacy and data governance capacity, data standards, exercise sovereignty, data stewardship and governance	PBRLNs can work with Indigenous communities and organizations to identify which EHR data are theirs and determine whether and how they might like to work with these data.
Building capacity: Learning must involve investing in communities and relationships, inclusive of diverse perspectives, positions, and knowledge systems.	Responsibility, ownership, action, stewardship, reciprocity, Pilimmaksarniq, access, ethical relationships, privacy and data governance capacity	PBRLN staff can include Indigenous community members or can contribute to Indigenous community or organization activities.
Striving for ethical sustainability: Learning is continuous, founded in relationships and ethical principles, and not project-based.	Ethics, action, reciprocity, representation, continually planning and preparing for the future, ethical relationships, evidence to build policy and programs, service redesign, ethical protocols, self-determination	PBRLNs can work with Indigenous communities and organizations to define the relationships from the outset.

EHR = electronic health record; PBRLN = practice-based research and learning network.

Meaningful engagement and relationships with people and organizations that have different perspectives is key. This helps in building relevant partnerships or data-sharing agreements. It is essential to respect Indigenous worldviews, cultures, and priorities. PBRLNs are tied to academic institutions that have historically marginalized these communities. Academic researchers must follow ethical protocols, but Indigenous ethics often go deeper.

Ongoing dialog and shared decision making are vital. They ensure that PBRLN projects are relevant and relational. Including Indigenous perspectives in PBRLN decision making supports communities in defining their data and its usefulness.

PBRLNs should embrace the idea of collective benefit as a criterion for “timely/relevant/valuable” research. This means understanding the needs of Indigenous patients, practitioners, and organizations whose data are part of the network. Inclusive actions could lead to published evidence or policies that change internal practices or inform clinical and governmental policies.

Transparent data governance in PBRLNs is necessary but not enough for Indigenous data sovereignty. PBRLNs must co-create respectful agreements that clarify who owns, controls, possesses, and accesses the data.

The frameworks we reviewed show a stark contrast between Indigenous ways of knowing and rigid or positivist western scientific approaches. Authors urged involving Indigenous scholars and knowledge keepers to lead data-driven projects, honoring their unique epistemologies and practices. Many frameworks highlighted the importance of being accountable to the land, the environment, and place.

In academic PBRLN settings, capacity building focuses inward through graduate courses and research assistantships. Framework authors also recommend looking outward. This includes inviting and remunerating Indigenous knowledge keepers and community leaders to help design and execute growth opportunities. Asking Indigenous community members and leaders how PBRLNs can build capacity is crucial for reciprocity and reconciliation. Supporting Nation-based data governance may involve providing equipment and space for Indigenous-led initiatives.

Using a relational, place-based approach is vital for PBRLN priority setting and project intake. It can help redesign health systems at local, provincial, and national levels to create and sustain more equitable outcomes.

DISCUSSION

This study contributes to a growing body of literature that examines and questions how current notions of learning health systems could (and should) better recognize and integrate Indigenous experiences and ways of knowing pertaining to data sovereignty,^37-39 using the example of PBRLNs. Most conceptualizations of learning health systems fail to consider Indigenous data governance and sovereignty,^39,40 which we found was true for PBRLNs in Canada.

Key Findings and Implications

Our findings strongly support a review of the learning health system literature by Rice et al.³⁹ There is a clear gap of applying Indigenous data governance and sovereignty principles within PBRLNs whose “learning” uses EHR data. It is encouraging that some PBRLN leaders expressed a desire to learn and gain resources to incorporate these principles into their work. Training is essential for data stewards, including physicians and other clinicians, managers, analysts, and users of Indigenous data. This training alone will not, however, advance Indigenous reconciliation. PBRLN researchers, clinicians, and staff must first acknowledge that PBRLNs in Canada hold Indigenous data, even when Indigenous patients or communities are not consistently identified.^14,40 The training could help PBRLN members to engage in conversations about data governance.^1,40 It also promotes more reflexive interactions between clinicians and Indigenous patients.⁴¹ Although this is a good start, PBRLNs need more resources to build and maintain relationships with Indigenous communities.

As Canadian funders, governments, and health systems invest in PBRLNs,^1,6,42 we must examine what types of “learning” these systems privilege and what ways of knowing are overlooked.^{14,22,37,39,43-45} Although PBRLN research has improved some health care systems,^8,9 the focus on structured clinical research often clashes with Indigenous knowledge systems and community-based approaches.^{22,37,39,43,44,46} This raises an important question: can PBRLNs, even with the right resources and ethical frameworks,^39,46 honor Indigenous data sovereignty while prioritizing deidentified clinical data?

Our team aligns with Indigenous and ally scholars calling for the “weaving” of Indigenous values into health system learning.^39,46-48 One opportunity for PBRLNs is to adopt “wise practices”^47,48 for using EHR and health data, defined as “locally appropriate actions, tools, principles or decisions that contribute significantly to the development of sustainable and equitable conditions.”^48(p19) Emphasizing place-based data and governance challenges the push for standardization in PBRLNs²⁴ and learning health systems,^1,49 and supports local knowledge and community benefits. A national PBRLN data governance structure that uses Indigenous data governance principles can coexist with region-specific wise practices.⁵⁰ This is achievable only when relationships and shared responsibilities are prioritized among Indigenous and nonIndigenous decision makers, funders, researchers, and communities.

Limitations

There are some limitations of our study. We did not elicit the perspectives of Indigenous community members, whose values, preferences, and interests likely vary considerably and could contradict our findings and recommendations. An important next step—exploring how researchers and learning health system practitioners conduct community engagement related to data sovereignty in PBRLNs—needs to be taken carefully and critically. Our survey was conducted in 2021 and there have been changes to PBRLNs since then, meaning that we may not have captured the depth of the work of PBRLN-related researchers.⁵¹ Our review of frameworks is not comprehensive or exhaustive, but reflects frequently cited frameworks of Indigenous data sovereignty in a Canadian context. Our summarizing process did not fully capture the depth and complexity of topics such as data and knowledge sovereignty because such concepts are often place-based, dependent on individual, community, and cultural worldviews and languages.^31,47,48 This review therefore does not include frameworks, practices, or principles of individual Nations or organizations, which PBRLN researchers, clinicians, and staff who work with these Nations should use instead.

CONCLUSIONS

Indigenous data governance should be part of practice-based research and learning networks in Canada. Indigenous data sovereignty frameworks offer ideas for this practice-based research context. Networks and learning health systems need to adopt wise practices that focus on place-based and relational learning to advance Indigenous reconciliation. A national data structure that integrates Indigenous data governance principles is important to move toward Indigenous data sovereignty.