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1.
Mol Ecol Resour ; 2023 Oct 24.
Article in English | MEDLINE | ID: mdl-37873890

ABSTRACT

Advances in sequencing technologies and declining costs are increasing the accessibility of large-scale biodiversity genomic datasets. To maximize the impact of these data, a careful, considered approach to data management is essential. However, challenges associated with the management of such datasets remain, exacerbated by uncertainty among the research community as to what constitutes best practices. As an interdisciplinary team with diverse data management experience, we recognize the growing need for guidance on comprehensive data management practices that minimize the risks of data loss, maximize efficiency for stand-alone projects, enhance opportunities for data reuse, facilitate Indigenous data sovereignty and uphold the FAIR and CARE Guiding Principles. Here, we describe four fictional personas reflecting differing user experiences with data management to identify data management challenges across the biodiversity genomics research ecosystem. We then use these personas to demonstrate realistic considerations, compromises and actions for biodiversity genomic data management. We also launch the Biodiversity Genomics Data Management Hub (https://genomicsaotearoa.github.io/data-management-resources/), containing tips, tricks and resources to support biodiversity genomics researchers, especially those new to data management, in their journey towards best practice. The Hub also provides an opportunity for those biodiversity researchers whose expertise lies beyond genomics and are keen to advance their data management journey. We aim to support the biodiversity genomics community in embedding data management throughout the research lifecycle to maximize research impact and outcomes.

6.
Obstet Gynecol ; 137(2): 234-239, 2021 02 01.
Article in English | MEDLINE | ID: mdl-33416289

ABSTRACT

Over the past decade, increasing attention has been paid to intervening in individuals' health in the "preconception" period as an approach to optimizing pregnancy outcomes. Increasing attention to the structural and social determinants of health and to the need to prioritize reproductive autonomy has underscored the need to evolve the preconception health framework to center race equity and to engage with the historical and social context in which reproduction and reproductive health care occur. In this commentary, we describe the results of a meeting with a multidisciplinary group of maternal and child health experts, reproductive health researchers and practitioners, and Reproductive Justice leaders to define a new approach for clinical and public health systems to engage with the health of nonpregnant people. We describe a novel "Reproductive and Sexual Health Equity" framework, defined as an approach to comprehensively meet people's reproductive and sexual health needs, with explicit attention to structural influences on health and health care and grounded in a desire to achieve the highest level of health for all people and address inequities in health outcomes. Principles of the framework include centering the needs of and redistributing power to communities, having clinical and public health systems acknowledge historical and ongoing harms related to reproductive and sexual health, and addressing root causes of inequities. We conclude with a call to action for a multisectoral effort centered in equity to advance reproductive and sexual health across the reproductive life course.


Subject(s)
Health Equity , Preconception Care , Reproductive Health , Sexual Health , Social Justice , Humans , Personal Autonomy
7.
J Assoc Nurses AIDS Care ; 28(4): 491-503, 2017.
Article in English | MEDLINE | ID: mdl-28442187

ABSTRACT

Engaging and retaining persons with HIV in care and treatment is key to reducing new HIV infections in the United States. Understanding the experiences, barriers, and facilitators to engaging and retaining persons in HIV care from the perspective of HIV care providers could help provide insight into how best to achieve this goal. We present qualitative data from 30 HIV care providers in three cities. We identified three facilitators to HIV care: providing a medical home, team-based care and strategies for engaging and retaining patients in HIV care, and focus on provider-patient relationships. We identified two main barriers to care: facility-level policies and patient-level challenges. Our findings suggest that providers embrace the medical home model for engaging patients but need support to identify aspects of the model that promote engagement in long-term HIV care, improve the quality of the provider-patient relationship, and address persistent logistical barriers, such as transportation.


Subject(s)
Continuity of Patient Care , HIV Infections/epidemiology , Health Personnel/psychology , Patient Acceptance of Health Care , Patient-Centered Care , Professional-Patient Relations , Adult , HIV Infections/drug therapy , HIV Infections/psychology , Health Services Accessibility , Humans , Interviews as Topic , Middle Aged , Qualitative Research , Social Stigma , Social Support
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