Exploring patient perspectives on the secondary use of their personal health information: an interview study.

Background: The increased digitalisation of health records has resulted in increased opportunities for the secondary use of health information for advancing healthcare. Understanding how patients want their health information used is vital to ensure health services use it in an appropriate and patient-informed manner. The aim of this study was to explore patient perceptions of the use of their health information beyond their immediate care.

Prognostic modelling of clinical outcomes after first-time acute coronary syndrome in New Zealand.

Objective: The Multi-Ethnic New Zealand Study of Acute Coronary Syndromes (MENZACS) was established to investigate the drivers of secondary events after first-time acute coronary syndrome (ACS), including addressing inequitable outcomes by ethnicity. Herein, the first clinical outcomes and prognostic modelling approach are reported.

Methods: First, in 28 176 New Zealanders with first-time ACS from a national registry, a clinical summary score for predicting 1-year death/cardiovascular readmission was created using Cox regression of 20 clinical variables.

Human papillomavirus self-testing among unscreened and under-screened Māori, Pasifika and Asian women in Aotearoa New Zealand: A preference survey among responders and interviews with clinical-trial nonresponders.

Introduction: Māori, Pasifika and Asian women are less likely to attend cervical screening and Māori and Pasifika women are more likely to be diagnosed with later-stage cervical cancer than other women in Aotearoa New Zealand. This study-with under-screened women taking part in a randomized-controlled trial comparing self-testing and standard screening-explored the acceptability of a human papillomavirus (HPV) self-test kit and the preferred method for receiving it.

Methods: Māori, Pasifika and Asian women (N= 376) completed a cross-sectional postal questionnaire.

Patient perspectives on the use of health information.

Aim: This survey aimed to investigate patient perspectives, including preferences, needs and concerns, on the use of, and access to, individual healthcare information.

Method: A mixed-methods cross-sectional survey of adult patients (n=1,377) in Waitematā District Health Board inpatient and outpatient services during November-December 2020. The survey was online and on paper and available in 10 languages.

Human Papillomavirus (HPV) Self-Sampling among Never-and Under-Screened Indigenous Māori, Pacific and Asian Women in Aotearoa New Zealand: A Feasibility Study.

In Aotearoa, New Zealand, the majority of cervical cancer cases occur in women who have never been screened or are under-screened. Wāhine Māori, Pacific and Asian women have the lowest rate of cervical screening. Self-sampling for human papillomavirus (HPV-SS) has been shown to increase participation in cervical cancer screening.

Acceptability of human papillomavirus (HPV) self-sampling among never- and under-screened Indigenous and other minority women: a randomised three-arm community trial in Aotearoa New Zealand.

Background: Internationally, self-sampling for human papillomavirus (HPV) has been shown to increase participation in cervical-cancer screening. In Aotearoa New Zealand, there are long-standing ethnic inequalities in cervical-cancer screening, incidence, and mortality, particularly for indigenous Māori women, as well as Pacific and Asian women.

Methods: We invited never- and markedly under-screened (≥5 years overdue) 30-69-year-old Māori, Pacific, and Asian women to participate in an open-label, three-arm, community-based, randomised controlled trial, with a nested sub-study.

Hui: a partnership in practice in familial hypercholesterolemia.

Aims: To empower a large whānau (extended family) with a history of severe premature heart disease and familial hypercholesterolemia (FH).

Methods: After broad consultation a Hui was held to discuss how to better manage this issue to ensure present and future generations were appropriately screened and treated.

Results: A closed social media page with detailed information on how to manage and screen FH that includes a family tree (for those who consent) has been created.

Correction to: Comparison of two invitation-based methods for human papillomavirus (HPV) self-sampling with usual care among un- and under-screened Māori, Pacific and Asian women: study protocol for a randomised controlled community trial to examine the effect of self-sampling on participation in cervical-cancer screening.

Following publication of the original article [1], the authors reported an error in the authorship list associated with the paper. Georgina McPherson has therefore been added.

Comparison of two invitation-based methods for human papillomavirus (HPV) self-sampling with usual care among un- and under-screened Māori, Pacific and Asian women: study protocol for a randomised controlled community trial to examine the effect of self-sampling on participation in cervical-cancer screening.

Background: Māori, Pacific and Asian women in New Zealand have lower cervical-cancer screening rates than European women, and there are persistent inequities in cervical cancer outcomes for Māori and Pacific women. Innovative ways to address access barriers are required. New Zealand is transitioning to screening with human papillomavirus (HPV) DNA testing, which could allow women themselves, rather than a clinician, to take the sample.

Mapping a route to Indigenous engagement in cancer genomic research.

Precision oncology guided by genomic research has an increasingly important role in the care of people with cancer. However, substantial inequities remain in cancer outcomes of Indigenous peoples, including Indigenous Māori in Aotearoa New Zealand (New Zealand). These inequities will be perpetuated unless deliberate steps are taken to include Indigenous peoples in all parts of cancer research-as research participants, in research leadership, and in research governance.

Engaging Māori in biobanking and genomic research: a model for biobanks to guide culturally informed governance, operational, and community engagement activities.

Purpose: He Tangata Kei Tua, a relationship model for biobanks, was developed to facilitate best practice in addressing Māori ethical concerns by guiding culturally informed policy and practice for biobanks in relation to governance, operational, and community engagement activities.

Methods: The model is based on key issues of relevance to Māori that were identified as part of the Health Research Council of New Zealand-funded research project, Te Mata Ira (2012-2015).

Results: This project identified Māori perspectives on biobanking and genetic research, and along with tikanga Māori it developed cultural guidelines for ethical biobanking and genetic research involving biospecimens.