Māori perspectives on health data use for predicting mate wareware (dementia)

In this article, we explore the perspectives of Māori with mate wareware (dementia) and their carers with respect to the use of their health records, particularly for the purposes of health research. Grounded in Kaupapa Māori research principles, we held two wānanga with members of a kaupapa Māori, mate wareware support group to explore their perspectives on uses of their health data. Themes developed that were relational with respect to agreed uses of data (whakaaetanga); reciprocal with respect to benefits to the community and future generations (manaakitanga); included expectations around degrees of control over data use (mana); included Māori cultural understandings of the relevance of spirituality and related tikanga to wellbeing (wairuatanga) and observed appropriate restrictions on sensitive material (tapu). Varied attitudes towards the use of health data in research strongly suggest that changes in health system data infrastructure are required to support Māori conceptions of appropriate data use.