Indigenous health equity in health register ascertainment and data quality: a narrative review

Significant health inequities in life expectancy at birth, mortality, and morbidity exist for Indigenous peoples in Aotearoa New Zealand (NZ) and many other Indigenous populations around the world [1]. Despite these pervasive and persisting inequities, health data related to Indigenous peoples are often inconsistent, irrelevant and of poor quality [2]. Health registers, standardised datasets relevant to a health condition (e.g., cerebral palsy, cancer, rheumatic fever), collect demographic and clinical information from registered participants. As such, they differ from administrative datasets and play an important role in answering specific health questions and monitoring distribution of disease and quality of care [3, 4]. However, poor ascertainment and data quality limit potential benefit to Indigenous health and equity.

Health inequities, differences in health that are unnecessary, avoidable, unfair and unjust [5], are complex and multifactorial. Social and economic policies act as structural drivers, shaping access to the conditions of daily living [6] and, therefore, creating stratification and social class divisions. Ethnicity is one such social status category, created by socio-political environments and racism [7, 8]. Ethnicity as a biological determinant of health has been rejected [8] and ethnic inequities are theorised to be produced by three main pathways: (i) differential access to social determinants of health, (ii) differential access to health care, and (iii) differences in quality of care received [9]. Williams & Mohammed (2013) [10] describe how pathways to inequities are driven by basic determinants including biology, geographic origins, societal institutions, and importantly, by racism and discrimination.

Racism, a form of oppression based on beliefs, attitudes and behaviours concerning differences between groups defined by ethnicity [11] operates at multiple levels. Institutional racism is defined as “differential access to the goods, services, and opportunities of society by race” (Jones 2000, p1212) [7] and, being the most fundamental level, is a basic determinant of ethnic inequities. For Indigenous peoples, colonisation and colonial systems act as the underlying driver of pathways to inequities, creating power structures, policies and attitudes that advantage non-Indigenous peoples and disadvantage Indigenous peoples [12]. Health organizations have an obligation to decolonise systems and services to contribute towards achieving health equity.

The New Zealand Cerebral Palsy Register has partnered with researchers from Te Kupenga Hauora Māori, University of Auckland to support Māori health equity centred research. The aims of this study were to identify commonly perceived barriers for the ascertainment of Indigenous peoples on health registers, and to collate strategies identified and used by health registers for supporting comprehensive ascertainment and the achievement of high-quality data for Indigenous peoples on their registers. Māori are the Indigenous people of Aotearoa NZ and a Kaupapa Māori theoretical framework was utilised to guide this work. Kaupapa Māori is a culturally defined and determined approach, supporting critical, transformational, and empowering research that is ‘by’, ‘with’, and ‘for’ Māori [13‐15]. The principal investigator is Māori; co-investigators are Shona and non-Māori non-Indigenous.

An adapted version of a Kaupapa Māori narrative review framework, Ngā Poutama Whetū, provided the framework for both a systematic and critical Indigenous perspective [16]. Ngā Poutama Whetū, translated to ‘stairway to the stars’, examines power relations and privileges Māori perspectives in order to “counter the privileged mono-cultural voice within academic literature” (Hapeta, Palmer & Hermansson, 2019, p210) [16]. Methods are described below under the following headings: Kaupapa, Tino rangatiratanga, Kia piki i ngā raruraru o te kainga, Ako, Taonga tuku iho, Whānau, and Kaupapa.

This study provides a comprehensive overview of commonly perceived barriers and proposed strategies supporting ascertainment and high-quality data of Indigenous peoples on health registers. Multiple interventions at health professional, service and system levels have been identified and may provide guidance for health registers seeking to prioritize health equity for Indigenous peoples.

Of note, poor ethnicity data quality was identified as a significant barrier to ascertainment and high-quality ethnicity data central to the achievement of high-quality data for Indigenous peoples. The existence of poor-quality ethnicity data in health registers is, unfortunately, unsurprising, with Indigenous population data stated to often be inconsistent, irrelevant, of poor quality, produced in an environment of mistrust, and controlled by those external to Indigenous nations [2]. Subsequently, data often undercounts Indigenous peoples, does not accurately reflect Indigenous realities, and does not inform Indigenous peoples’ needs [2]. For health registers, these critical data issues limit the potential to identify, prioritize, and address Indigenous health and health service-related inequities.

Despite the breadth of barriers identified for ascertainment, there are noticeable gaps in the barriers and pathways to inequities when a socioecological framework, such as that proposed by Williams [8] is applied. Barriers identified include some basic causes (e.g., legislation) and proximal pathways (e.g., discrimination, access to health services, and health service orientation). However, racism, specifically institutional racism, and broader political and economic institutions are noticeably absent.

Findings from this review indicate a disconnect between perceived barriers and solutions. Strategies to support ascertainment and data quality are predominantly orientated towards individual responses and proximal pathways, thus focussing on access to services, general processes/systems, and individual or community responsibility. Although important, such strategies are unlikely to eliminate ethnic inequities if fundamental causes, such as institutional racism, are left unaddressed [10, 40].

The reporting of the CONSIDER checklist [19] for health research involving Indigenous peoples provides potential insight into the degree of collaboration between health registers and Indigenous peoples and organizations. Few studies included within this review overtly described governance and partnership agreements with Indigenous organizations, suggesting either absence in existence or in reporting. An absence of Indigenous leadership or Indigenous participation in Indigenous health research is common, raising significant concerns regarding the appropriateness of approach, methods, interpretation and reporting, and prioritizing of health research itself [41]. Indigenous methodologies, strength-based analysis and interpretation, activities to support Indigenous research capacity, and dissemination to Indigenous governing bodies were also not explicitly identified within the studies included within this review. Favourable research impact and benefit is more likely when issues are relevant to Indigenous peoples, Indigenous peoples are participants, Indigenous knowledges and perspectives are incorporated, findings meaningful, and potential end-users engaged from the outset [42]. Importantly, benefit from Indigenous research must be meaningful and valued by diverse Indigenous communities [43].

In contrast, collaboration with Indigenous communities and organizations in the development and governance of health registries was identified as a potential strategy supporting Indigenous health equity. This finding is consistent with Indigenous data sovereignty scholarship articulating both the right and need for Indigenous knowledges and approaches to be integrated into policy and practice [44]. Indigenous data sovereignty is defined as the right of a nation to “… control the collection, ownership, and application of its own data” (US Indigenous Data Sovereignty Network) [45]. Importantly, it is derived from inherent rights of Indigenous peoples to govern their peoples, lands, and resources, and is inclusive of data from and about Indigenous peoples, resources and environments [44]. Furthermore, it provides the opportunity to enhance community trust in data and improve data availability, quality, and relevance to support population health gain [2, 46].

Through colonial practices, including the suppression of Indigenous knowledge systems and exclusion of Indigenous peoples from data sovereignty, Indigenous peoples have been divorced from data infrastructure and capacity into a state of “data dependency” [46]. Health registers that predominantly reflect non-Indigenous ways of knowing and doing may, although potentially unintentional, fail to identify and adequately address issues relevant to Indigenous peoples. Therefore, to support high quality Indigenous data and realise Indigenous data sovereignty in health registers, systematic and structural change is required. Three main themes supporting successful Indigenous data sovereignty have previously been identified: (i) strategic responses to data challenges; (ii) engaging with community to educate leaders and citizens about data; and (iii) using data to inform policy decisions and resource allocation to strengthen Indigenous self-determination [2]. Such transformation requires transfer of power and control [47], and both organizational and resource commitment to Indigenous health gain and equity.

This study has several strengths. A Kaupapa Māori approach and use of the Ngā Poutama Whetū framework supported a robust narrative review process that centred Māori worldviews and Indigenous health gain. The systematic approach and deliberate exclusion of deficit framing support findings that are of benefit to Indigenous health and equity. Inevitably, there are also some limitations to identify and discuss. Outcomes of this narrative review are limited to research published in English and those available and identified within the select databases. Of note, most research is in North America and, therefore, the generalisability of findings outside of North America should be considered. Few articles overtly aimed to identify barriers and strategies relating to ascertainment and data quality of Indigenous peoples on health registers. As such, an inclusive approach was used within our screening process (i.e., research articles continued through to a full text review even though no clear mention of barriers or strategies were made). Even with this inclusive and systematic approach, it is possible that further eligible studies are available that were not included within this review. In addition, as Indigenous involvement in research was limited, barriers (real or perceived) and strategies identified in this review may not reflect Indigenous peoples’ perspectives and preferences. Finally, assessing the ‘success’ or effectiveness of strategies was outside the scope of this study. There is significant opportunity for future research, led by or conducted in partnership with Indigenous researchers and organizations, to review, audit and evaluate targeted approaches to the ascertainment of Indigenous peoples and achievement of high data quality in health registers.

Health registers are central to the accurate monitoring of disease prevalence and outcomes. Although there is a considerable body of peer reviewed published evidence pertaining to ascertainment and data quality of health registers, there is more limited evidence to identify strategies specific to Indigenous peoples. From the literature included in this systematic narrative review, it is apparent that multiple interventions at many levels (system, service, and community) are used to ascertain Indigenous peoples on health registers and ensure high quality data. However, when viewed through a critical structural determinants lens, there are visible gaps in the breadth of strategies, particularly the inclusion of Indigenous peoples in health register and research governance, and actions to identify and address institutional racism. These gaps perpetuate the collection of inconsistent, incomplete, and poor-quality data for Indigenous peoples in health registers, preventing the achievement of health equity and exemplifying inaction in the face of need. Recognising that, though unique barriers and strategies may exist for different Indigenous populations across the world, we propose that potential commonalities present an opportunity for Indigenous led research and a sharing of knowledge and experiences between health registers. Sharing, networking, and meaningful collaboration with Indigenous communities and organizations supports health registers to be structured and operate to achieve Indigenous health equity.