title: Characteristics and outcomes of patients with small cell lung cancer - findings from a New Zealand SACT database

authors: Lawrenson, Ross

abstract: Background Small Cell Lung Cancer (SCLC) SCLC generally presents late and is treated with systemic anti-cancer treatment (SACT). Māori are over represented in Lung Cancer statistics but disparities between Māori and non-Māori in patterns of care and survival from SCLC have not been previously reported. 
Methods We used the custom-built SACT database collected by the Oncology Department at Waikato Hospital NZ, which recorded comprehensive lung cancer patient factors and SACT regimens from 2000 to 2021. We reported summary statistics to review the treatment by ethnicity, explored Kaplan Meier all-cause survival of patients, and estimated the unadjusted and adjusted odds ratios of surviving 12 months. 
Results 742 patients with SCLC were included in this study, with 43% identified as Māori. Approximately 75% of patients received SACT, and there was no difference in the uptake of SACT between Māori and non-Māori. The median survival for SCLC was 8.5 months. After adjustment, patients treated with carboplatin plus etoposide (with/without durvalumab) or cisplatin plus etoposide were 1.5 times or 4.9 times respectively more likely to survive 12 months than those without a SACT regimen.
Conclusion There was no significant evidence of disparities in patterns of care and outcomes between Māori and non-Māori with SCLC. Carboplatin/cisplatin in combination with etoposide remained the primary first line SACT regimen for patients with SCLC in this New Zealand cancer treatment centre.

text: Characteristics and outcomes of patients with small cell lung cancer - findings from a New Zealand SACT database Background Small Cell Lung Cancer (SCLC) SCLC generally presents late and is treated with systemic anti-cancer treatment (SACT). Māori are over represented in Lung Cancer statistics but disparities between Māori and non-Māori in patterns of care and survival from SCLC have not been previously reported. 
Methods We used the custom-built SACT database collected by the Oncology Department at Waikato Hospital NZ, which recorded comprehensive lung cancer patient factors and SACT regimens from 2000 to 2021. We reported summary statistics to review the treatment by ethnicity, explored Kaplan Meier all-cause survival of patients, and estimated the unadjusted and adjusted odds ratios of surviving 12 months. 
Results 742 patients with SCLC were included in this study, with 43% identified as Māori. Approximately 75% of patients received SACT, and there was no difference in the uptake of SACT between Māori and non-Māori. The median survival for SCLC was 8.5 months. After adjustment, patients treated with carboplatin plus etoposide (with/without durvalumab) or cisplatin plus etoposide were 1.5 times or 4.9 times respectively more likely to survive 12 months than those without a SACT regimen.
Conclusion There was no significant evidence of disparities in patterns of care and outcomes between Māori and non-Māori with SCLC. Carboplatin/cisplatin in combination with etoposide remained the primary first line SACT regimen for patients with SCLC in this New Zealand cancer treatment centre.

year: 2023-02-10

title: The Māori health data governance model: A planning and protocol checklist

authors: Kremer, Lisa

abstract: 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).

text: The Māori health data governance model: A planning and protocol checklist 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).

year: 2025

title: Local Implications of International Human Rights Treaties: The Impact of a CEDAW Right to Public Life in the Republic of Maldives

authors: Jabyn, Marium

abstract: In 1979, the Convention on the Elimination of All Forms of Discrimination against Women (CEDAW) codified women’s rights to equality in both private and public spheres of life, and introduced it as a global norm. It stipulated not only that women should not be discriminated against, but also that women should be equal recipients in the allocation and enjoyment of human rights. To this end, it imposed obligations on States Parties and provided multiple approaches towards achieving women’s equality. In general, the international community has invested over six decades in constructing a ‘global’ system of human rights where consenting sovereign States Parties have agreed on a ‘universal’ standard of rights to be protected and promoted within and beyond their national borders. Despite ‘universal’ commitments to human rights treaties, expressed through ratification, and many times through creating the required national legislation and policy changes, human rights goals are yet to be achieved. 

Using a CEDAW right to public life, this thesis examines the two aspects of treaty implementation: integration into domestic norms and enforcement of treaty norms through treaty enforcement mechanisms established by the UN. By illustrating gaps in ‘rights-in-principle’ and ‘rights-in-practice’, this thesis offers an insider's perspective on the tensions between a CEDAW right to public life and the domestic situation in the Republic of Maldives. Rights-in-principle is measured through an analysis of domestic legal instruments, identifying the extent to which CEDAW has been incorporated into legislation, government policy and initiatives. Data for the rights-in-practice measure was collected through semi-structured interviews conducted with purposively selected participants, representing both State and non-State actors. The information gathered through interviews was analysed both manually and using the NVivo-10 Software. The data was then interpreted using the capabilities theory, examining how limited capabilities arising out of gendered practices, cultures and structures affect the successful local implementation of a CEDAW right to public life.  

The findings from the rights-in-practice segment of the research demonstrate a highly gendered world, where links between political power and male leadership are seen as natural and women ideally suited to roles either within the domestic sphere or a care-taking role. Participation in public life is also dependent on class (family status), property ownership and resources, and affiliations with political parties. However, the belief in socially distinct roles is a dominant feature within the local, and heavily affects women’s lives and their autonomy. Gender based differences, it is argued, is rooted in deep cultural and religious beliefs and change is often resisted by the local community. It is also anticipated that fast growing religious fundamentalism in the Maldives will significantly impact women’s rights in the near future. Thus, while CEDAW, and its articulation of a right to public life, embodies a framework for substantive equality that aims to entitle, enable and empower women to pursue the CEDAW right to public life, the State has yet to ensure a right to public life, as envisaged by the Convention. 

The thesis acknowledges that a CEDAW right to public life has had an impact, but mainly at a formal level, changing domestic law and policy, but has had limited impact on the achievement of equality for women. The situation in the Maldives is further compounded by the nature of the international human rights platform, which is primarily based on State consent, leading to limited intercultural dialogue between CEDAW and its States Parties and little pressure on the States Party, which further cements the status quo. Ad hoc procedures, lack of committed personnel to draft treaty reports, and low level of civil society engagement in the process, also significantly affects effective treaty implementation. Thus, both ‘local struggles’ and the existing structure of the international human rights treaty enforcement mechanisms poses challenges for the pursuit of a CEDAW right to public life. 

This thesis is a much-needed exploration of how local cultures appropriate and enact international human rights law, and will be of enormous value to persons working with international human rights particularly in the Maldivian context, and also at the global level. It makes both theoretical and methodological contributions to international human rights law in the area of human rights and treaty compliance.

text: Local Implications of International Human Rights Treaties: The Impact of a CEDAW Right to Public Life in the Republic of Maldives In 1979, the Convention on the Elimination of All Forms of Discrimination against Women (CEDAW) codified women’s rights to equality in both private and public spheres of life, and introduced it as a global norm. It stipulated not only that women should not be discriminated against, but also that women should be equal recipients in the allocation and enjoyment of human rights. To this end, it imposed obligations on States Parties and provided multiple approaches towards achieving women’s equality. In general, the international community has invested over six decades in constructing a ‘global’ system of human rights where consenting sovereign States Parties have agreed on a ‘universal’ standard of rights to be protected and promoted within and beyond their national borders. Despite ‘universal’ commitments to human rights treaties, expressed through ratification, and many times through creating the required national legislation and policy changes, human rights goals are yet to be achieved. 

Using a CEDAW right to public life, this thesis examines the two aspects of treaty implementation: integration into domestic norms and enforcement of treaty norms through treaty enforcement mechanisms established by the UN. By illustrating gaps in ‘rights-in-principle’ and ‘rights-in-practice’, this thesis offers an insider's perspective on the tensions between a CEDAW right to public life and the domestic situation in the Republic of Maldives. Rights-in-principle is measured through an analysis of domestic legal instruments, identifying the extent to which CEDAW has been incorporated into legislation, government policy and initiatives. Data for the rights-in-practice measure was collected through semi-structured interviews conducted with purposively selected participants, representing both State and non-State actors. The information gathered through interviews was analysed both manually and using the NVivo-10 Software. The data was then interpreted using the capabilities theory, examining how limited capabilities arising out of gendered practices, cultures and structures affect the successful local implementation of a CEDAW right to public life.  

The findings from the rights-in-practice segment of the research demonstrate a highly gendered world, where links between political power and male leadership are seen as natural and women ideally suited to roles either within the domestic sphere or a care-taking role. Participation in public life is also dependent on class (family status), property ownership and resources, and affiliations with political parties. However, the belief in socially distinct roles is a dominant feature within the local, and heavily affects women’s lives and their autonomy. Gender based differences, it is argued, is rooted in deep cultural and religious beliefs and change is often resisted by the local community. It is also anticipated that fast growing religious fundamentalism in the Maldives will significantly impact women’s rights in the near future. Thus, while CEDAW, and its articulation of a right to public life, embodies a framework for substantive equality that aims to entitle, enable and empower women to pursue the CEDAW right to public life, the State has yet to ensure a right to public life, as envisaged by the Convention. 

The thesis acknowledges that a CEDAW right to public life has had an impact, but mainly at a formal level, changing domestic law and policy, but has had limited impact on the achievement of equality for women. The situation in the Maldives is further compounded by the nature of the international human rights platform, which is primarily based on State consent, leading to limited intercultural dialogue between CEDAW and its States Parties and little pressure on the States Party, which further cements the status quo. Ad hoc procedures, lack of committed personnel to draft treaty reports, and low level of civil society engagement in the process, also significantly affects effective treaty implementation. Thus, both ‘local struggles’ and the existing structure of the international human rights treaty enforcement mechanisms poses challenges for the pursuit of a CEDAW right to public life. 

This thesis is a much-needed exploration of how local cultures appropriate and enact international human rights law, and will be of enormous value to persons working with international human rights particularly in the Maldivian context, and also at the global level. It makes both theoretical and methodological contributions to international human rights law in the area of human rights and treaty compliance.

year: 2016