title: Benefit sharing: Why inclusive provenance metadata matter

authors: Golan, J

abstract: Fair and equitable benefit sharing of genetic resources is an expectation of the Nagoya Protocol. Although the Nagoya Protocol does not yet formally apply to Digital Sequence Information (“DSI”), discussions are currently underway regarding to include such data through ongoing Convention on Biological Diversity (“CBD”) negotiations. While Indigenous Peoples and Local Communities (“IPLC”) expect the value generated from genomic data to be subject to benefit sharing arrangements, a range of views are currently being expressed by Nation States, IPLC and other stakeholders. The use of DSI gives rise to unique considerations, creating a gray area as to how it should be considered under the Nagoya Protocol’s Access and Benefit Sharing (“ABS”) principles. One way for benefit sharing to be enhanced is through the connection of data to proper provenance information. A significant development is the use of digital labeling systems to ensure that the origin of samples is appropriately disclosed. The Traditional Knowledge and Biocultural Labels initiative offers a practical option for data provided to genomic databases. In particular, the BioCultural Labels (“BC Labels”) are a mechanism for Indigenous communities to identify and maintain provenance, origin and authority over biocultural material and data generated from Indigenous land and waters held in research, cultural institutions and data repositories. This form of cultural metadata adds value to the research endeavor and the creation of Indigenous fields within databases adds transparency and accountability to the research environment.

text: Benefit sharing: Why inclusive provenance metadata matter Fair and equitable benefit sharing of genetic resources is an expectation of the Nagoya Protocol. Although the Nagoya Protocol does not yet formally apply to Digital Sequence Information (“DSI”), discussions are currently underway regarding to include such data through ongoing Convention on Biological Diversity (“CBD”) negotiations. While Indigenous Peoples and Local Communities (“IPLC”) expect the value generated from genomic data to be subject to benefit sharing arrangements, a range of views are currently being expressed by Nation States, IPLC and other stakeholders. The use of DSI gives rise to unique considerations, creating a gray area as to how it should be considered under the Nagoya Protocol’s Access and Benefit Sharing (“ABS”) principles. One way for benefit sharing to be enhanced is through the connection of data to proper provenance information. A significant development is the use of digital labeling systems to ensure that the origin of samples is appropriately disclosed. The Traditional Knowledge and Biocultural Labels initiative offers a practical option for data provided to genomic databases. In particular, the BioCultural Labels (“BC Labels”) are a mechanism for Indigenous communities to identify and maintain provenance, origin and authority over biocultural material and data generated from Indigenous land and waters held in research, cultural institutions and data repositories. This form of cultural metadata adds value to the research endeavor and the creation of Indigenous fields within databases adds transparency and accountability to the research environment.

year: 2022

title: Young people’s perspectives on school counselling

authors: Crocket, Kathie

abstract: While school counselling is well established in secondary schools in Aotearoa New Zealand, there have been few resources available to establish a complementary research base. This article reports on a small survey study that investigated the perspectives of young people who had used school counselling services during the two weeks of the online survey. The survey replicated one strategy employed within a much larger evaluation study of the counselling services in three schools in Glasgow, Scotland. In focusing on only one research strategy—student self-report via survey—the study makes a small contribution to discussion of evaluation practices for school guidance counselling in New Zealand. As in the larger Glasgow study, young people in the small sample in this study evaluated school counselling as helpful across a number of dimensions of their lives.

text: Young people’s perspectives on school counselling While school counselling is well established in secondary schools in Aotearoa New Zealand, there have been few resources available to establish a complementary research base. This article reports on a small survey study that investigated the perspectives of young people who had used school counselling services during the two weeks of the online survey. The survey replicated one strategy employed within a much larger evaluation study of the counselling services in three schools in Glasgow, Scotland. In focusing on only one research strategy—student self-report via survey—the study makes a small contribution to discussion of evaluation practices for school guidance counselling in New Zealand. As in the larger Glasgow study, young people in the small sample in this study evaluated school counselling as helpful across a number of dimensions of their lives.

year: 2015

title: A walking stick in one hand and a chainsaw in the other: Patients’ perspectives of living with multimorbidity

authors: Signal, Louise

abstract: AIMS: Multimorbidity is common, yet there are major gaps in research, particularly among younger and indigenous populations. This research aimed to understand patients’ perspectives of living with multimorbidity. 

METHODS: A qualitative study of 61 people living with multimorbidity, 27 of whom were Māori and a third aged under 65, from urban and rural regions in New Zealand. Six focus groups and 14 interviews were conducted, recorded, transcribed and analysed. 
RESULTS: For many participants, living with multimorbidity disrupted their ‘normal’ lives, posing challenges in everyday activities such as eating and toileting, working and managing medications. Dealing with the health system posed challenges such as accessing appointments and having enough time in consultations. Cultural competency, good communication and continuity of care from healthcare providers were all valued. Participants had many recommendations to improve management, including a professional single point of contact to coordinate all specialist care. 
CONCLUSIONS: Living with multimorbidity is often challenging requiring people to manage their conditions while continuing to live their lives. This research suggests changes are needed in the health system in New Zealand and elsewhere to better manage multimorbidity thus improving patient’s lives and reducing costs to the health sector and wider society.

text: A walking stick in one hand and a chainsaw in the other: Patients’ perspectives of living with multimorbidity AIMS: Multimorbidity is common, yet there are major gaps in research, particularly among younger and indigenous populations. This research aimed to understand patients’ perspectives of living with multimorbidity. 

METHODS: A qualitative study of 61 people living with multimorbidity, 27 of whom were Māori and a third aged under 65, from urban and rural regions in New Zealand. Six focus groups and 14 interviews were conducted, recorded, transcribed and analysed. 
RESULTS: For many participants, living with multimorbidity disrupted their ‘normal’ lives, posing challenges in everyday activities such as eating and toileting, working and managing medications. Dealing with the health system posed challenges such as accessing appointments and having enough time in consultations. Cultural competency, good communication and continuity of care from healthcare providers were all valued. Participants had many recommendations to improve management, including a professional single point of contact to coordinate all specialist care. 
CONCLUSIONS: Living with multimorbidity is often challenging requiring people to manage their conditions while continuing to live their lives. This research suggests changes are needed in the health system in New Zealand and elsewhere to better manage multimorbidity thus improving patient’s lives and reducing costs to the health sector and wider society.

year: 2017