Indigenous and Tribal Peoples Data Governance in Health Research: A Systematic Review.

There is increasing potential to improve the research and reporting on the health and wellbeing of Indigenous and Tribal peoples through the collection and (re)use of population-level data. As the data economy grows and the value of data increases, the optimization of data pertaining to Indigenous peoples requires governance that defines who makes decisions on behalf of whom and how these data can and should be used. An international a priori PROSPERO (#CRD42020170033) systematic review was undertaken to examine the health research literature to (1) identify, describe, and synthesize definitions and principles; (2) identify and describe data governance frameworks; and (3) identify, describe, and synthesize processes, policies and practices used in Indigenous Data Governance (ID-GOV). Sixty-eight articles were included in the review that found five components that require consideration in the governance of health research data pertaining to Indigenous people. This included (1) Indigenous governance; (2) institutional ethics; (3) socio-political dynamics; (4) data management and data stewardship; and (5) overarching influences. This review provides the first systematic international review of ID-GOV that could potentially be used in a range of governance strategies moving forward in health research.

Evaluation of an Australian Aboriginal model of maternity care: The Malabar Community Midwifery Link Service.

BACKGROUND: The urban-based Malabar Community Midwifery Link Service integrates multidisciplinary wrap-around services along-side continuity of midwifery care for Aboriginal and Torres Strait Islander mothers and babies. AIM: To evaluate the Malabar Service from 1 January 2007 to 31 December 2014. METHODS: A mixed method design. Outcomes for mothers of Aboriginal and/or Torres Strait Islander babies cared for at an urban Australian referral hospital by the Malabar Service were compared to mainstream. Primary outcomes are rates of low birth weight; smoking >20 weeks gestation; preterm birth; and breastfeeding at discharge. Malabar outcomes are also compared to national and state perinatal outcomes. RESULTS: The Malabar Service (n = 505) demonstrated similar rates of preterm birth (aOR 2.2, 95% CI 0.96-4.97); breastfeeding at discharge (aOR 1.1, 95% CI 0.61-1.86); and a higher rate of low birth weight babies (aOR 3.6, 95% CI 1.02-12.9) than the comparison group (n = 201). There was a 25% reduction in smoking rates from 38.9% to 29.1%. Compared to national and state populations, Malabar outcomes were better. Women experienced greater psychosocial complexity but were well supported. Malabar Mothers (n = 9) experienced: accessibility, preparedness for birth and cultural safety. Staff (n = 13) identified going 'above and beyond' and teamwork to provide culturally safe care counterbalanced with concerns around funding and cultural support. CONCLUSIONS: Dedicated integrated continuity of midwifery care with wrap-around services for Aboriginal and/or Torres Strait Islander mothers is highly valued and is culturally safe. The service is as safe as main stream services and promotes better clinical outcomes compared to national and state outcomes.