Developing \u27knowdes\u27 through authentic community engagement: the Shoalhaven way of structuring social innovation at the local level

Shoalhaven Campus recognises the importance of promoting regional development in imaginative and innovative ways. It does so by developing \u27knowdes\u27 through multiple linkages with local structures. Within Shoalhaven\u27s unique context: structures are systems or organizations made up of interrelated parts functioning as a whole; nodes are the networks of interacting structures; and \u27knowdes\u27 are knowledge-based nodes which generate, transfer and translate knowledge for social innovation within the local community. Government departments, local schools and businesses, members of the Shoalhaven and Koori communities are examples of local structures with which Shoalhaven Campus engages to facilitate social innovation. Within the Campus itself, there are different structures: administration, faculties, research, learning and teaching, students and staff. These Campus structures link with each other at various times for different purposes. Authentic engagement with local structures is central to the Campus\u27s social innovation. This paper describes the Sustainable Aquaculture project, involving collaboration of a private investor, the Shoalhaven Marine and Fresh Water Centre and the local Koori community as an example of a research \u27knowde\u27. The Career Expo is presented as an administration-directed, integrated workplace learning \u27knowde\u27 for school students. The project, \u27Nowra Skate Park: What it means to me\u27 illustrates a student-driven learning and teaching \u27knowde\u27 that highlighted recreational and leisure needs of local youth to the general public through an art exhibition. In its unique way, Shoalhaven is fostering social innovation and addressing local needs by building and strengthening knowledge capacities through authentic engagement with diverse local structures

Toward an Age-Friendly Portland

Toward an Age-Friendly Portland connects the people-friendly efforts of the Portland Plan with input and specific needs expressed by older Portlanders to create a vision for what people want their neighborhoods to be like as they grow older. This vision informs recommendations that may be integrated into Portland’s planning efforts. Orca Planning found that the needs of older adults now and in the future are not adequately met by the transportation, housing and greenspace options available in today’s Portland. This project was conducted under the supervision of Ethan Seltzer and Gil Kelley

Digital orphans: Data closure and openness in patient- powered networks

This is the author accepted manuscript. The final version is available from Palgrave Macmillan via the DOI in this record.In this paper, we discuss an issue linked to data-sharing regimes in patient-powered, social-media-based networks, namely that most of the data that patient users share are not used to research scientific issues or the patient voice. This is not a trivial issue, as participation in these networks is linked to openness in data sharing, which would benefits fellow patients and contributes to the public good more generally. Patient-powered research networks are often framed as disrupting research agendas and the industry. However, when data that patients share are not accessible for research, their epistemic potential is denied. The problem is linked to the business models of the organisations managing these networks: models centred on controlling patient data tend to close networks with regard to data use. The constraint on research is at odds with the ideals of a sharing, open and supportive epistemic community that networks’ own narratives evoke. This kind of failure can create peculiar scenarios, such as the emergence of the ‘digital orphans’ of Internet research. By pointing out the issue of data use, this paper informs the discussion about the capacity of patient-powered networks to support research participation and the patient voice.We are indebted to the anonymous reviewers and the editor, who with their supportive and constructive comments helped us to better clarify and highlight the argument of the article. We would like to also thank friends and colleagues who have offered valuable comments and suggestions on early drafts of this paper. We would like to especially thank Barbara Prainsack, Sabina Leonelli, Alena Buyx, and David Teira. This research is funded by the European Research Council (ERC) under the European Union’s Seventh Framework Programme (FP7/2007–2013)/ERC grant agreement number 335925, and the German Federal Ministry of Education and Research (grant number 01GP1311

Neuropsychiatric risk in children with intellectual disability of genetic origin: IMAGINE - The UK National Cohort Study

Background: Children with intellectual disability (ID) frequently have multiple co-morbid neuropsychiatric conditions and poor physical health. Genomic testing is increasingly recommended as a first-line investigation for these children. We aimed to determine the impact of genomics, inheritance and socioeconomic deprivation on neuropsychiatric risk in children with intellectual disability of genetic origin as compared to the general population. Methods: IMAGINE is a prospective study using online mental health and medical assessments in a cohort of 2770 children with ID and pathogenic genomic variants, identified by the UK’s National Health Service. Outcomes: Assessments completed on 2397 young people with ID (4-19 years, M 9·2, SD 3·9) with a rare pathogenic genomic variant. 1339 (55·9%) were male. 1771 (73·9%) of participants had a pathogenic copy number variant (CNV), 626 (26·1%) a pathogenic single nucleotide variant (SNV). Participants were representative of the socioeconomic spectrum of the UK general population. The relative risk of co-occurring neuropsychiatric diagnoses, compared with the UK national population, was high: Autism Spectrum Disorder 29·2 (95% CI 23·9 to 36·5), Attention Deficit Hyperactivity Disorder 13·5 (95% CI 11·1 to 16·3). In children with a CNV, those with a familial variant tended to live in more socioeconomically deprived areas. Both inheritance and socioeconomic deprivation contributed to neuropsychiatric risk in those with a CNV. Interpretation: Children with genomic variants and ID are at a greatly enhanced risk of neuropsychiatric difficulties. CNV variant inheritance and socioeconomic deprivation also contribute to the risk

Neuropsychiatric risk in children with intellectual disability of genetic origin: IMAGINE, a UK national cohort study

Background Children with intellectual disability frequently have multiple co-morbid neuropsychiatric conditions and poor physical health. Genomic testing is increasingly recommended as a first-line investigation for these children. We aim to determine the effect of genomics, inheritance, and socioeconomic deprivation on neuropsychiatric risk in children with intellectual disability of genetic origin as compared with the general population. Methods IMAGINE is a prospective cohort study using online mental health and medical assessments in a cohort of 3407 UK participants with intellectual disability and pathogenic genomic variants as identified by the UK's National Health Service (NHS). Our study is on a subset of these participants, including all children aged 4–19 years. We collected diagnostic genomic reports from NHS records and asked primary caregivers to provide an assessment of their child using the Development and Well-Being Assessment (DAWBA), the Strengths and Difficulties Questionnaire (SDQ), the Adaptive Behaviour Assessment System 3 (ABAS-3), and a medical history questionnaire. Each child was assigned a rank based on their postcode using the index of multiple deprivation (IMD). We compared the IMAGINE cohort with the 2017 National Survey of Children's Mental Health in England. The main outcomes of interest were mental health and neurodevelopment according to the DAWBA and SDQ. Findings We recruited 2770 children from the IMAGINE study between Oct 1, 2014 and June 30, 2019, of whom 2397 (86·5%) had a basic assessment of their mental health completed by their families and 1277 (46·1%) completed a medical history questionnaire. The mean age of participants was 9·2 years (SD 3·9); 1339 (55·9%) were boys and 1058 (44·1%) were girls. 355 (27·8%) of 1277 reported a seizure disorder and 814 (63·7%) reported movement or co-ordination problems. 1771 (73·9%) of 2397 participants had a pathogenic copy number variant (CNV) and 626 (26·1%) had a pathogenic single nucleotide variant (SNV). Participants were representative of the socioeconomic spectrum of the UK general population. The relative risk (RR) of co-occurring neuropsychiatric diagnoses, compared with the English national population, was high: autism spectrum disorder RR 29·2 (95% CI 23·9–36·5), ADHD RR 13·5 (95% CI 11·1–16·3). In children with a CNV, those with a familial variant tended to live in more socioeconomically deprived areas than those with a de novo variant. Both inheritance and socioeconomic deprivation contributed to neuropsychiatric risk in those with a CNV. Interpretation Children with genomic variants and intellectual disability are at an increased risk of neuropsychiatric difficulties. CNV variant inheritance and socioeconomic deprivation also contribute to the risk. Early genomic investigations of children with intellectual disability could facilitate the identification of the most vulnerable children. Additionally, harnessing parental expertise using online DAWBA assessments could rapidly identify children with exceptional needs to child mental health services

Are we there yet? Reflections of two occupational therapists at different stages of their professional journeys

Powerpoint presentation presented at the OT AUSTRALIA National Conference and Exhibition 201

Developing the potential of occupational science through intercultural dialogue

Intercultural dialogue is critical for the development of occupational science as it facilitates collaboration in occupational science education and research. Establishing networks and exchanging ideas through collaboration strengthens the potential of occupational science to contribute to professional practice and social policy

Environmental Migrants and the Future of the Willamette Valley: A Preliminary Exploration

This report reviews existing data and research on predicted impacts of climate change in the Northwestern United States, and specifically focuses on the level of preparedness to accommodate new population growth due to climate migration in Oregon’s Willamette Valley. Climate change impacts in Oregon are predicted to be less severe than in other areas of the country. Generally, models project warmer, wetter winters and hotter, drier summers in the Willamette Valley and other areas west of the Cascade Range. This will likely make the Willamette Valley a more desirable place for environmentally displaced people to locate. This report considers how Oregon might plan for this potential increase in population

Understanding the occupational implications of a Koori development scholarship: a case study of the Fisheries Research and Development Corporation Indigenous Training Scholarship at the Shoalhaven Marine and Freshwater Centre

This report is the outcome of a case study which explored the occupational implications of an indigenous development program funded by the Fisheries Research and Development Corporation and hosted by the Shoalhaven Marine and Freshwater Centre. Approval for the study, undertaken by the Australasian Occupational Science Centre, was granted by the University of Wollongong‟s Human Research Ethics Committee. The scholarship holder was a Koori man living in the Shoalhaven on the south coast of NSW. The development program ran from June 2009 to January 2010. The study adopted an occupational perspective to understand the effects of the program on the scholarship holder‟s personal experiences, self esteem, and future vocational plans. Entries in the scholarship holder‟s journal and informal interviews between the scholarship holder and the study investigator were the narrative data used in the study. In addition, the investigator‟s observations of the scholarship holder and discussions with his supervisor contributed to understanding the occupational implications of the program