AIM: To learn from two jurisdictions with mature genomics-informed nursing policy infrastructure-the United States (US) and the United Kingdom (UK)-to inform policy development for genomics-informed oncology nursing practice and education in Canada. DESIGN: Comparative document and policy analysis drawing on the 3i + E framework. METHODS: We drew on the principles of a rapid review and identified academic literature, grey literature and nursing policy documents through a systematic search of two databases, a website search of national genomics nursing and oncology nursing organizations in the US and UK, and recommendations from subject matter experts on an international advisory committee. A total of 94 documents informed our analysis. RESULTS: We found several types of policy documents guiding genomics-informed nursing practice and education in the US and UK. These included position statements, policy advocacy briefs, competencies, scope and standards of practice and education and curriculum frameworks. Examples of drivers that influenced policy development included nurses' values in aligning with evidence and meeting public expectations, strong nurse leaders, policy networks and shifting healthcare and policy landscapes. CONCLUSION: Our analysis of nursing policy infrastructure in the US and UK provides a framework to guide policy recommendations to accelerate the integration of genomics into Canadian oncology nursing practice and education. IMPLICATIONS FOR THE PROFESSION: Findings can assist Canadian oncology nurses in developing nursing policy infrastructure that supports full participation in safe and equitable genomics-informed oncology nursing practice and education within an interprofessional context. IMPACT: This study informs Canadian policy development for genomics-informed oncology nursing education and practice. The experiences of other countries demonstrate that change is incremental, and investment from strong advocates and collaborators can accelerate the integration of genomics into nursing. Though this research focuses on oncology nursing, it may also inform other nursing practice contexts influenced by genomics.
Parkinson's disease (PD) is a neurodegenerative disorder characterised by motor symptoms such as gait dysfunction and postural instability. Technological tools to continuously monitor outcomes could capture the hour-by-hour symptom fluctuations of PD. Development of such tools is hampered by the lack of labelled datasets from home settings. To this end, we propose REMAP (REal-world Mobility Activities in Parkinson's disease), a human rater-labelled dataset collected in a home-like setting. It includes people with and without PD doing sit-to-stand transitions and turns in gait. These discrete activities are captured from periods of free-living (unobserved, unstructured) and during clinical assessments. The PD participants withheld their dopaminergic medications for a time (causing increased symptoms), so their activities are labelled as being "on" or "off" medications. Accelerometry from wrist-worn wearables and skeleton pose video data is included. We present an open dataset, where the data is coarsened to reduce re-identifiability, and a controlled dataset available on application which contains more refined data. A use-case for the data to estimate sit-to-stand speed and duration is illustrated.
Parkinson Disease , Humans , Accelerometry , Gait , Time
In the 20 years since the initial sequencing of the human genome, genomics has become increasingly relevant to nursing. We sought to chart the current state of genomics in nursing by conducting a systematic scoping review of the literature in four databases (2012-2022). The included articles were categorized according to the Cochrane Collaboration outcome domains/sub-domains, and thematic analysis was employed to identify key topical areas to summarize the state of the science. Of 8532 retrieved articles, we identified 232 eligible articles. The articles primarily reported descriptive studies from the United States and other high-income countries (191/232, 82%). More than half (126/232, 54.3%) aligned with the "healthcare provider oriented outcomes" outcome domain. Three times as many articles related to the "knowledge and understanding" sub-domain compared to the "consultation process" subdomain (96 vs. 30). Five key areas of focus were identified, including "nursing practice" (50/126, 40%), "genetic counseling and screening" (29/126, 23%), "specialist nursing" (21/126, 17%), "nurse preparatory education" (17/126, 13%), and "pharmacogenomics" (9/126, 7%). Only 42/126 (33%) articles reported interventional studies. To further integrate genomics into nursing, study findings indicate there is a need to move beyond descriptive work on knowledge and understanding to focus on interventional studies and implementation of genomics into nursing practice.
Genomics , Health Personnel , Humans , United States , Educational Status
Introduction: Technology holds the potential to track disease progression and response to neuroprotective therapies in Parkinson's disease (PD). The sit-to-stand (STS) transition is a frequently occurring event which is important to people with PD. The aim of this study was to demonstrate an automatic approach to quantify STS duration and speed using a real-world free-living dataset and look at clinical correlations of the outcomes, including whether STS parameters change when someone withholds PD medications. Methods: Eighty-five hours of video data were collected from 24 participants staying in pairs for 5-day periods in a naturalistic setting. Skeleton joints were extracted from the video data; the head trajectory was estimated and used to estimate the STS parameters of duration and speed. Results: 3.14 STS transitions were seen per hour per person on average. Significant correlations were seen between automatic and manual STS duration (Pearson rho - 0.419, p = 0.042) and between automatic STS speed and manual STS duration (Pearson rho - 0.780, p < 0.001). Significant and strong correlations were seen between the gold-standard clinical rating scale scores and both STS duration and STS speed; these correlations were not seen in the STS transitions when the participants were carrying something in their hand(s). Significant differences were seen at the cohort level between control and PD participants' ON medications' STS duration (U = 6,263, p = 0.018) and speed (U = 9,965, p < 0.001). At an individual level, only two participants with PD became significantly slower to STS when they were OFF medications; withholding medications did not significantly change STS duration at an individual level in any participant. Conclusion: We demonstrate a novel approach to automatically quantify and ecologically validate two STS parameters which correlate with gold-standard clinical tools measuring disease severity in PD.
AIM: This study aimed to identify how dietitians and other healthcare providers work to build trust in food systems in the course of providing dietary education. METHODS: Qualitative semi-structured interviews were conducted with 15 purposefully sampled dietitians (n = 5), general practitioners (n = 5), and complementary and alternative medicine practitioners (n = 5) within metropolitan South Australia. Interview data were then interpreted using an inductive thematic analysis approach, involving the construction of themes representing trust-enhancing roles around which beliefs about professional roles, the 'patient', and food and health were clustered. RESULTS: Healthcare providers communicate beliefs regarding (dis)trust in food systems through: (i) responding to patient queries and concerns following a food incident or scare; (ii) helping patients to identify (un)trustworthy elements of food supply systems; and (iii) encouraging consumption of locally produced and minimally processed food. Importantly, the expression of these roles differed according to participant beliefs about food and health (medico-scientific versus alternative medicine) and their adoption of professional projects that sought to promote medico-scientific ways of thinking about health and diet or manage the failures of Western medicine. CONCLUSION: The development and consolidation of trust-enhancing roles amongst healthcare providers likely requires disciplinary reflection on professional values and the processes by which practitioners apply these values to understanding food systems.
BACKGROUND: The current assessment of recovery after total hip or knee replacement is largely based on the measurement of health outcomes through self-report and clinical observations at follow-up appointments in clinical settings. Home activity-based monitoring may improve assessment of recovery by enabling the collection of more holistic information on a continuous basis. OBJECTIVE: This study aimed to introduce orthopedic surgeons to time-series analyses of patient activity data generated from a platform of sensors deployed in the homes of patients who have undergone primary total hip or knee replacement and understand the potential role of these data in postoperative clinical decision-making. METHODS: Orthopedic surgeons and registrars were recruited through a combination of convenience and snowball sampling. Inclusion criteria were a minimum required experience in total joint replacement surgery specific to the hip or knee or familiarity with postoperative recovery assessment. Exclusion criteria included a lack of specific experience in the field. Of the 9 approached participants, 6 (67%) orthopedic surgeons and 3 (33%) registrars took part in either 1 of 3 focus groups or 1 of 2 interviews. Data were collected using an action-based approach in which stimulus materials (mock data visualizations) provided imaginative and creative interactions with the data. The data were analyzed using a thematic analysis approach. RESULTS: Each data visualization was presented sequentially followed by a discussion of key illustrative commentary from participants, ending with a summary of key themes emerging across the focus group and interview data set. CONCLUSIONS: The limitations of the evidence are as follows. The data presented are from 1 English hospital. However, all data reflect the views of surgeons following standard national approaches and training. Although convenience sampling was used, participants' background, skills, and experience were considered heterogeneous. Passively collected home monitoring data offered a real opportunity to more objectively characterize patients' recovery from surgery. However, orthopedic surgeons highlighted the considerable difficulty in navigating large amounts of complex data within short medical consultations with patients. Orthopedic surgeons thought that a proposed dashboard presenting information and decision support alerts would fit best with existing clinical workflows. From this, the following guidelines for system design were developed: minimize the risk of misinterpreting data, express a level of confidence in the data, support clinicians in developing relevant skills as time-series data are often unfamiliar, and consider the impact of patient engagement with data in the future. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.1136/bmjopen-2018-021862.
SPHERE is a large multidisciplinary project to research and develop a sensor network to facilitate home healthcare by activity monitoring, specifically towards activities of daily living. It aims to use the latest technologies in low powered sensors, internet of things, machine learning and automated decision making to provide benefits to patients and clinicians. This dataset comprises data collected from a SPHERE sensor network deployment during a set of experiments conducted in the 'SPHERE House' in Bristol, UK, during 2016, including video tracking, accelerometer and environmental sensor data obtained by volunteers undertaking both scripted and non-scripted activities of daily living in a domestic residence. Trained annotators provided ground-truth labels annotating posture, ambulation, activity and location. This dataset is a valuable resource both within and outside the machine learning community, particularly in developing and evaluating algorithms for identifying activities of daily living from multi-modal sensor data in real-world environments. A subset of this dataset was released as a machine learning competition in association with the European Conference on Machine Learning (ECML-PKDD 2016).
Activities of Daily Living , Monitoring, Ambulatory , Humans , Algorithms , Machine Learning
Despite long histories of traditional food security, Indigenous peoples globally are disproportionately exposed to food insecurity. Addressing this imbalance must be a partnership led by Indigenous peoples in accordance with the UN Declaration of the Rights of Indigenous Peoples. We report the co-design process and resulting design of a food security research project in remote Australia and examine how the co-design process considered Indigenous peoples' ways of knowing, being, and doing using the CREATE Tool. Informed by the Research for Impact Tool, together Aboriginal Community Controlled Health Organisation staff, Indigenous and non-Indigenous public health researchers designed the project from 2018-2019, over a series of workshops and through the establishment of research advisory groups. The resulting Remote Food Security Project includes two phases. Phase 1 determines the impact of a healthy food price discount strategy on the diet quality of women and children, and the experience of food (in)security in remote communities in Australia. In Phase 2, community members propose solutions to improve food security and develop a translation plan. Examination with the CREATE Tool showed that employing a co-design process guided by a best practice tool has resulted in a research design that responds to calls for food security in remote Indigenous communities in Australia. The design takes a strengths-based approach consistent with a human rights, social justice, and broader empowerment agenda. Trial registration: The trial included in Phase 1 of this project has been registered with Australian New Zealand Clinical Trials Registry: ACTRN12621000640808.
Australian Aboriginal and Torres Strait Islander Peoples , Health Services, Indigenous , Child , Humans , Female , Australia , Diet , Food , Food Security
INTRODUCTION: Turning in gait digital parameters may be useful in measuring disease progression in Parkinson's disease (PD), however challenges remain over algorithm validation in real-world settings. The influence of clinician observation on turning outcomes is poorly understood. Our objective is to describe a unique in-home video dataset and explore the use of turning parameters as biomarkers in PD. METHODS: 11 participants with PD, 11 control participants stayed in a home-like setting living freely for 5 days (with two sessions of clinical assessment), during which high-resolution video was captured. Clinicians watched the videos, identified turns and documented turning parameters. RESULTS: From 85 hours of video 3869 turns were evaluated, averaging at 22.7 turns per hour per person. 6 participants had significantly different numbers of turning steps and/or turn duration between "ON" and "OFF" medication states. Positive Spearman correlations were seen between the Movement Disorders Society-sponsored revision of the Unified Parkinson's Disease Rating Scale III score with a) number of turning steps (rho = 0.893, p < 0.001), and b) duration of turn (rho = 0.744, p = 0.009) "OFF" medications. A positive correlation was seen "ON" medications between number of turning steps and clinical rating scale score (rho = 0.618, p = 0.048). Both cohorts took more steps and shorter durations of turn during observed clinical assessments than when free-living. CONCLUSION: This study shows proof of concept that real-world free-living turn duration and number of turning steps recorded can distinguish between PD medication states and correlate with gold-standard clinical rating scale scores. It illustrates a methodology for ecological validation of real-world digital outcomes.
Parkinson Disease , Humans , Parkinson Disease/complications , Gait , Mental Status and Dementia Tests , Disease Progression , Algorithms
BACKGROUND: Parkinson disease (PD) symptoms are complex, gradually progressive, and fluctuate hour by hour. Home-based technological sensors are being investigated to measure symptoms and track disease progression. A smart home sensor platform, with cameras and wearable devices, could be a useful tool to use to get a fuller picture of what someone's symptoms are like. High-resolution video can capture the ground truth of symptoms and activities. There is a paucity of information about the acceptability of such sensors in PD. OBJECTIVE: The primary objective of our study was to explore the acceptability of living with a multimodal sensor platform in a naturalistic setting in PD. Two subobjectives are to identify any suggested limitations and to explore the sensors' impact on participant behaviors. METHODS: A qualitative study was conducted with an inductive approach using semistructured interviews with a cohort of PD and control participants who lived freely for several days in a home-like environment while continuously being sensed. RESULTS: This study of 24 participants (12 with PD) found that it is broadly acceptable to use multimodal sensors including wrist-worn wearables, cameras, and other ambient sensors passively in free-living in PD. The sensor that was found to be the least acceptable was the wearable device. Suggested limitations on the platform for home deployment included camera-free time and space. Behavior changes were noted by the study participants, which may have related to being passively sensed. Recording high-resolution video in the home setting for limited periods of time was felt to be acceptable to all participants. CONCLUSIONS: The results broaden the knowledge of what types of sensors are acceptable for use in research in PD and what potential limitations on these sensors should be considered in future work. The participants' reported behavior change in this study should inform future similar research design to take this factor into account. Collaborative research study design, involving people living with PD at every stage, is important to ensure that the technology is acceptable and that the data outcomes produced are ecologically valid and accurate. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.1136/bmjopen-2020-041303.
Awareness and management of ethical issues in data science are becoming crucial skills for data scientists. Discussion of contemporary issues in collaborative and interdisciplinary spaces is an engaging way to allow data-science work to be influenced by those with expertise in sociological fields and so improve the ability of data scientists to think critically about the ethics of their work. However, opportunities to do so are limited. Data Ethics Club is a fortnightly discussion group about data science and ethics whose community-generated resources are hosted publicly online. These include a collaborative list of materials around topics of interest and guides for leading an online data-ethics discussion group. Our meetings and resources are designed to reduce the barriers to learning, reflection, and critique on data science and ethics, with the broader aim of building ethics into the cultural fabric of quality data-science work.
Introduction: South Australia has to date (October 2021) been highly successful in maintaining an aggressive suppression strategy for the management of the COVID-19 pandemic. However, continued success of this strategy is dependent on ongoing testing by people with symptoms of COVID-19 to identify, trace and quarantine emergent cases as soon as possible. This study sought to explore community members' decisions about having COVID-19 testing in an environment of low prevalence, specifically exploring their decision-making related to symptoms. Materials and methods: This study drew on a qualitative case study design, involving five focus groups, conducted in May 2021, with 29 individuals who had experienced COVID-19-like symptoms since the commencement of testing in South Australia. Participants detailed their last COVID-19-like illness episode and described their decision-making regarding testing. Data collection methods and analysis were theoretically informed by the capability, opportunity, and motivation behaviour (COM-B) model. Findings: Participants' belief that COVID-19 symptoms would be 'unusual', severe, and persistent caused them to either reject or delay testing. Participants generally employed 'watch and wait' and social distancing behaviour rather than timely presentation to testing. Concern about economic loss associated with isolating after testing, and the potential for illness transmission at testing centres further prevented testing for some participants. Conclusions: In a low COVID-19 prevalence environment, individuals rely on pre-existing strategies for interpreting and managing personal illness (such as delaying help seeking if symptoms are mild), which generally conflict with public health management advice about COVID-19. In low prevalence environments therefore public health authorities must give the public a reason to test beyond considerations of personal risk, and clearly communicate the need for ongoing COVID-19 surveillance despite the low prevalence environment.
BACKGROUND: Consumer trust in food systems is essential for consumers, food industry, policy makers and regulators. Yet no comprehensive tool for measuring consumer trust in food systems exists. Similarly, the impact that trust in the food system has on health-related food behaviours is yet to be empirically examined. The aim of this research was to develop a comprehensive instrument to measure trust in the food system (the Dimensions of Trust in Food Systems Scale (DOTIFS scale) and use it to explore whether trust in the food system impacts consumers' health-related behaviours. METHODS: The DOTIFS scale was developed using sociological theories of trust and pre-existing instruments measuring aspects of trust. It was pilot tested and content validity was assessed with 85 participants. A mixed-methods exploration of the health-related behaviours of 18 conveniently sampled Australian consumers with differing trust scores determined by the DOTIFS scale was then conducted. During March-July 2019 shopping- and home-observations were used to assess participants' food safety practices and exposure to public health fortification programs, while the CSIRO Healthy Diet Score determined their adherence to national dietary guidelines. RESULTS: The DOTIFS scale was found to have high comprehension, ease of use and content validity. Statistical analysis showed scale scores significantly trended as predicted by participants' stated level of trust. Differences were found in the way individuals with more or less trust in the food system comply with national dietary guidelines, are exposed to public health fortification programs, and adhere to recommended food safety practices. CONCLUSIONS: The DOTIFS scale is a comprehensive, sociologically- and empirically- informed assessment of consumer trust in food systems that can be self-administered online to large populations and used to measure changes in consumer trust over time. The differences in health-related behaviours between individuals with varying levels of trust warrant further investigation.
Food Safety , Trust , Australia , Consumer Behavior , Diet, Healthy , Food Industry , Humans
PURPOSE: Widespread, quality genomics education for health professionals is required to create a competent genomic workforce. A lack of standards for reporting genomics education and evaluation limits the evidence base for replication and comparison. We therefore undertook a consensus process to develop a recommended minimum set of information to support consistent reporting of design, development, delivery, and evaluation of genomics education interventions. METHODS: Draft standards were derived from literature (25 items from 21 publications). Thirty-six international experts were purposively recruited for three rounds of a modified Delphi process to reach consensus on relevance, clarity, comprehensiveness, utility, and design. RESULTS: The final standards include 18 items relating to development and delivery of genomics education interventions, 12 relating to evaluation, and 1 on stakeholder engagement. CONCLUSION: These Reporting Item Standards for Education and its Evaluation in Genomics (RISE2 Genomics) are intended to be widely applicable across settings and health professions. Their use by those involved in reporting genomics education interventions and evaluation, as well as adoption by journals and policy makers as the expected standard, will support greater transparency, consistency, and comprehensiveness of reporting. Consequently, the genomics education evidence base will be more robust, enabling high-quality education and evaluation across diverse settings.
Genomics , Research Report , Consensus , Delphi Technique , Humans , Stakeholder Participation
AIM: To evaluate the effects of a novel, immersive digital story intervention on empathy. DESIGN: A randomized trial with three phases. RESULTS: A total of 238 2nd year nursing students were recruited between May 2018 and December 2019. At baseline, no significant differences in empathy between the groups were found (p = .760). However, at post-test, empathy was significantly higher in the intervention group (M: 118.76, SD: 10.65) than it was in the control group (M: 114.60, SD: 15.40) (p = .012). At follow-up, there were no significant differences in empathy between the groups (p = .364). CONCLUSION: The intervention resulted in an immediate increase in empathy in nursing students. However, further development of effective intervention delivery modes and fundamental redesign of the intervention itself would be needed to sustain this improvement over the long term.
Education, Nursing, Baccalaureate , Students, Nursing , Diagnostic Tests, Routine , Empathy , Humans
INTRODUCTION: The impact of disease-modifying agents on disease progression in Parkinson's disease is largely assessed in clinical trials using clinical rating scales. These scales have drawbacks in terms of their ability to capture the fluctuating nature of symptoms while living in a naturalistic environment. The SPHERE (Sensor Platform for HEalthcare in a Residential Environment) project has designed a multi-sensor platform with multimodal devices designed to allow continuous, relatively inexpensive, unobtrusive sensing of motor, non-motor and activities of daily living metrics in a home or a home-like environment. The aim of this study is to evaluate how the SPHERE technology can measure aspects of Parkinson's disease. METHODS AND ANALYSIS: This is a small-scale feasibility and acceptability study during which 12 pairs of participants (comprising a person with Parkinson's and a healthy control participant) will stay and live freely for 5 days in a home-like environment embedded with SPHERE technology including environmental, appliance monitoring, wrist-worn accelerometry and camera sensors. These data will be collected alongside clinical rating scales, participant diary entries and expert clinician annotations of colour video images. Machine learning will be used to look for a signal to discriminate between Parkinson's disease and control, and between Parkinson's disease symptoms 'on' and 'off' medications. Additional outcome measures including bradykinesia, activity level, sleep parameters and some activities of daily living will be explored. Acceptability of the technology will be evaluated qualitatively using semi-structured interviews. ETHICS AND DISSEMINATION: Ethical approval has been given to commence this study; the results will be disseminated as widely as appropriate.
Parkinson Disease , Activities of Daily Living , Feasibility Studies , Humans , Outcome Assessment, Health Care , Parkinson Disease/diagnosis , Symptom Assessment , Technology
Global pandemics are likely to increase in frequency and severity, and media communication of key messages represents an important mediator of the behavior of individuals in response to public health countermeasures. Where the media places responsibility during a pandemic is therefore important to study as blame is commonly used as a tool to influence public behavior but can also lead to the subjective persecution of groups. The aim of this paper is to investigate where the media places responsibility for COVID-19 in Australia. Specifically, we identify the key themes and frames that are present and observe how they changed over the course of the COVID-19 pandemic in relation to government actions and progression of the pandemic. Understanding media representations of the COVID-19 pandemic will provide insights into ways in which responsibility is framed in relation to health action. Newspaper articles from the Australian and the Sydney Morning Herald were sampled between January 20 and March 31 2020 on every second Monday. Factiva was used to identify and download newspaper articles using the following search criteria: "COVID-19" OR coronavirus OR "Wuhan virus" OR "corona virus" OR "Hebei virus" OR "wet market" OR (Wuhan AND virus) OR (market AND Wuhan and virus) or (China AND Virus) or (Novel AND Virus). Articles were imported into Nvivo and thematic and framing analyses were used. The results show that framing of the pandemic was largely based on societal issues with the theme of economic disruption prevalent throughout the study time period. Moral evaluations of the pandemic were infrequent initially but increased co-incident with the first signs of "flattening of the curve." Explicit examples of blame were very rare but were commonly implied based on the causal origin of the virus. The Australian printed media were slow to report on the COVID-19 pandemic, in addition they were reluctant to apportion blame until the end of the study period, after confirmed case rates had begun to slow. This is interpreted as being due to an evaluation of the pandemic risks as low by the media and therefore the tools of othering and blame were not used until after the study period when the actual risks had begun to abate, more consistent with an inquiry than a mediating mechanism.
COVID-19 , Pandemics , Australia/epidemiology , China , Humans , Pandemics/prevention & control , SARS-CoV-2
Trust in public health officials and the information they provide is essential for the public uptake of preventative strategies to reduce the transmission of COVID-19. This paper discusses how a model for developing and maintaining trust in public health officials during food safety incidents and scandals might be applied to pandemic management. The model identifies ten strategies to be considered, including: transparency; development of protocols and procedures; credibility; proactivity; putting the public first; collaborating with stakeholders; consistency; education of stakeholders and the public; building your reputation; and keeping your promises. While pandemic management differs insofar as the responsibility lies with the public rather than identifiable regulatory bodies, and governments must weigh competing risks in creating policy, we conclude that many of the strategies identified in our trust model can be successfully applied to the maintenance of trust in public health officials prior to, during, and after pandemics.
COVID-19 , Food Safety , Pandemics , Trust , Humans , Public Health
BACKGROUND: Working effectively with Aboriginal and Torres Strait Islander people is important for maximising the effectiveness of a health care interaction between and Aboriginal and Torres Strait Islander patients and a health professional. This paper presents a framework to guide health professional practice in Aboriginal and Torres Strait Islander health. METHODS: This qualitative study was based in a social constructionist epistemology and was guided by a critical social research methodology. Two methods were employed: interviews with Aboriginal health workers and allied health professionals about their experiences of working together in Aboriginal health, and an auto-ethnography conducted by the researcher, a non-Aboriginal dietitian and researcher who worked closely with two Aboriginal communities while undertaking this research. RESULTS: Interviews were conducted with 44 allied health professionals and Aboriginal health workers in 2010. Critical Social research, which involves the deconstruction and reconstruction of data, was used to analyse data and guided the evolution of themes. Strategies that were identified as important to guide practice when working respectfully in Aboriginal health included: Aboriginal and non-Aboriginal people working with Aboriginal health workers, using appropriate processes, demonstrating commitment to building relationships, relinquishing control, having an awareness of Aboriginal history, communication, commitment, flexibility, humility, honesty, and persistence. Reciprocity and reflection/reflexivity were found to be cornerstone strategies from which many other strategies naturally followed. Strategies were grouped into three categories: approach, skills and personal attributes which led to development of the Framework. CONCLUSIONS: The approach, skills and personal attributes of health professionals are important when working in Aboriginal health. The strategies identified in each category provide a Framework for all health professionals to use when working with Aboriginal and Torres Strait Islander people.
Cooperative Behavior , Health Personnel/psychology , Health Services, Indigenous/organization & administration , Native Hawaiian or Other Pacific Islander , Female , Health Personnel/statistics & numerical data , Humans , Male , Qualitative Research
PURPOSE: Nurse leaders driving strategic integration of genomics across nursing need tools and resources to evaluate their environment, guide strategies to address deficits, and benchmark progress. We describe the development and pilot testing of a self-assessment maturity matrix (MM) that enables users to benchmark the current state of nursing genomic competency and integration for their country or nursing group; guides the development of a strategic course for improvement and implementation; and assesses change over time. DESIGN: Mixed-methods participatory research and self-assessment. METHODS: During a 3-day workshop involving nursing experts in health care and genomics, a genomic integration MM grid was built by consensus using iterative participatory methods. Data were analyzed using descriptive techniques. This work built on an online survey involving the same participants to identify the critical elements needed for "effective nursing which promotes health outcomes globally through genomics." FINDINGS: Experts from 19 countries across six continents and seven organizations participated in item development. The Assessment of Strategic Integration of Genomics across Nursing (ASIGN) MM incorporates 55 outcome-focused items serving as subscales for six critical success factors (CSFs): education and workforce; effective nursing practice; infrastructure and resources; collaboration and communication; public/patient involvement; policy and leadership. Users select their current circumstances for each item against a 5-point ordinal scale (precontemplation to leading). Nurses representing 17 countries undertook matrix pilot testing. Results demonstrate variation across CSFs, with many countries at the earliest stages of implementation. CONCLUSIONS: The MM has the potential to guide the strategic integration of genomics across nursing and enables additional assessments within and between countries to be made. CLINICAL RELEVANCE: Nurse leadership and direction are essential to accelerate integration of genomics across nursing practice and education. The MM helps nurse leaders to benchmark progress and guide strategic planning to build global genomic nursing capacity.
Benchmarking/methods , Delivery of Health Care/organization & administration , Genomics , Health Policy , Nurse Administrators/psychology , Genomics/education , Humans
