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M?ori in Aotearoa have higher incidence, prevalence and mortality from chronic disease. The dominant narrative in Aotearoa about the reasons for M?ori ill health neglects to acknowledge the history of colonisation and failures of the health system, alongside the holistic view of health taken by M?ori focusing on collective, wh?nau-based outcomes. In this article, we review health interventions for chronic disease that have a kaupapa M?ori philosophical basis. Our findings demonstrate that there is no clear process in health service design, delivery, research and funding that values and understands m?tauranga M?ori. Western knowledge systems are inadequate for collecting and presenting M?ori knowledge. Overall, we highlight that the tension between acknowledging that a ?by M?ori, for M?ori? approach is best, and the difficulty in defining appropriate evidence collection methodology and outcome measures when funders and policy makers continue to require Western-centric interventions is an obstacle to improving M?ori health outcomes.
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Co-designed research is gaining prominence within the health care space. Community engagement is a key premise of co-design and is also particularly vital when carrying out kaupapa Māori research. Kaupapa Māori describes a “by Māori, for Māori” approach to research in Aotearoa/New Zealand. This article discusses the research process of Hā Ora: a co-design project underpinned by a kaupapa Māori approach. The objective was to explore the barriers to early presentation and diagnosis of lung cancer, barriers identified by Māori. The team worked with four rural Māori communities, with whom we aimed to co-design local interventions that would promote earlier diagnosis of lung cancer. This article highlights and unpacks the complexities of carrying out community- engaged co-design with Māori who live in rural communities. In particular, we draw attention to the importance of flexibility and adaptability in the research process. We highlight issues pertaining to timelines and budgets, and also the intricacies of involving co-governance and advisory groups. Overall, through this article, we argue that health researchers need to prioritise working with and for participants, rather than on them, especially when working with Māori communities.
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Addressing Indigenous rights and interests in genetic resources has become increasingly challenging in an open science environment that promotes unrestricted access to genomic data. Although Indigenous experiences with genetic research have been shaped by a series of negative interactions, there is increasing recognition that equitable benefits can only be realized through greater participation of Indigenous communities. Issues of trust, accountability and equity underpin Indigenous critiques of genetic research and the sharing of genomic data. This Perspectives article highlights identified issues for Indigenous communities around the sharing of genomic data and suggests principles and actions that genomic researchers can adopt to recognize community rights and interests in data.
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- co-governance (1)
- crown law (1)
- data sovereignty (1)
- ethics (1)
- genes (1)
- genetic databases (1)
- genomic sequencing (1)
- health (1)
- health equity (1)
- health inequity (1)
- kaupapa māori (2)
- population genetics (1)
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