The Māori Health Data Governance Model: A planning and protocol checklist

<h2>Abstract</h2><h3>Purpose</h3> Māori health data (MHD) governance is a critical enabler of achieving health equity for Māori. The Māori Data Governance Model (the Model) provides a framework for all stages of Māori data handling but has yet to be meaningfully implemented within health settings. This study aimed to meet the need for health-specific guidance by adapting the Model to create an MHD governance checklist. This checklist can be used by health researchers and agencies to develop and embed their own MHD governance protocol (e.g. embed within study protocol). <h3>Methods</h3> Eight <i>Pou</i> were adapted from the Model and further questions were generated from The Health Services and Outcomes Kaupapa Inquiry WAI2575, National Ethics Advisory Committee guideline and the CARE (collective benefit, authority to control, responsibility, ethics) principles. <h3>Main findings</h3> Every effort should be made to include Māori participation in the health research or agency that involves any aspect of MHD within all adapted eight data <i>Pou</i>. If this is not possible, an explanation for reasons why and actions for contributing to short-term and long-term solutions for this should be provided. <h3>Principal conclusion</h3> The MHD governance planning and protocol checklist provides a <i>te Tiriti o Waitangi</i> approach for health researchers and agencies that can be implemented alongside current ethical practices. The checklist is an actionable tool that can be used to contribute to health equity for Māori.