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      Collecting Sensitive Personal Data in a Multi-Cultural Environment

      1 , 1 , 1 , 1 , 1 , 2

      Proceedings of the 32nd International BCS Human Computer Interaction Conference (HCI)

      Human Computer Interaction Conference

      4 - 6 July 2018

      Traumatic Brain Injury, HCI methodology, qualitative data, participatory design

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          Abstract

          Traumatic Brain Injury (TBI) has long-term effects on memory and cognitive functions. This paper discusses the challenges encountered and lessons learned from developing augmented memory aids for people with TBI. In particular, the paper discusses methodologies used to elicit potentially sensitive and personal data.

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          Most cited references 10

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          Quality of hospital care for Māori patients in New Zealand: retrospective cross-sectional assessment.

          New Zealand has a substantial indigenous minority--the Māori--that has considerably worse health status than the majority population. We aimed to assess possible disparities in quality of hospital care for Māori with data on preventable adverse events as an indicator of suboptimum treatment. We undertook a nationally representative cross-sectional survey of admissions to general public hospitals with more than 100 beds providing acute care. A sample of 6579 patients admitted in 1998 to 13 hospitals was selected by stratified systematic list sample. We did a two-stage retrospective assessment of records by structured implicit review. Outcome measures were occurrence, effect, and preventability of adverse events. Māori accounted for just greater than 15% of admissions and were on average younger, were more likely to be from from deprived areas, had a different case mix, and were in hospital for a shorter stay compared with patients of non-Māori/non-Pacific origin. Overall, after age standardisation, 14% of admissions for Māori were associated with an adverse event, compared with 11% for non-Māori/non-Pacific patients (p=0.01 for difference between groups). For preventable, in-hospital events, this disparity persisted after controlling for age, other sociodemographic factors, and case mix (adjusted odds ratio 1.47; p=0.05). Analysis of potential causal factors showed no markedly or consistently different pattern between the groups. Despite a predominantly publicly funded hospital system, our findings suggest that hospital care received by Māori is marginally poorer than that received by New Zealand citizens of non-Māori/non-Pacific origin. Although no cause specific to Māori was evident, various policy and system issues can be addressed.
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            Epidemiology of ischaemic stroke and traumatic brain injury.

            Acquired brain injury, including both Ischaemic stroke (IS) and Traumatic Brain injury (TBI), is one of the most common causes of disability and death in adults. Yet there are vast differences in our knowledge of their epidemiology. While the incidence, case-fatality and risk factors for stroke are well established, work needs to continue particularly in low-income countries, where these data remain sparse; and in relation to specific stroke subtypes such as IS. Similar data regarding the epidemiology of TBI are generally lacking. The majority of TBI incidence studies have focussed on hospital-based samples and there are no established criteria from which to design high quality epidemiological studies. The need to establish such criteria separate from those already available for stroke is suggested given the differing demographic profile of TBI as well as differences in seeking of medical attention for TBI. The immense burden of stroke can be reduced by prevention of modifiable risk factors particularly in developing countries where both changing lifestyle and lack of healthcare resources are contributing to rising stroke incidence and mortality. Similarly, studies to date indicate that TBI incidence can be reduced by addressing modifiable risk factors such as alcohol abuse, risk-taking behaviour and socioeconomic disparities. Copyright © 2010 Elsevier Ltd. All rights reserved.
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              Trends in Head Injury Incidence in New Zealand: A Hospital-Based Study from 1997/1998 to 2003/2004

              Traumatic brain injury (TBI) is a leading cause of disability and death in young adults. Globally, the incidence of TBI hospitalizations is estimated at 200–300 people per 100,000 annually. Using a national health database, we examined the incidence of TBI-related hospital discharges (including 1-day stays) to New Zealand Hospitals from 1997/1998 to 2003/2004. Crude annual hospital-based incidence rates for the total population ranged from 226.9 per 100,000 in 1998/1999 to a high rate of 349.2 in 2002/2003. There was a noticeable increase in rates with the change from ICD-9 to ICD-10 diagnostic codes and there was also disparity in incidence rates according to ethnicity, age and gender. Crude annual hospital-based incidence rates for males and females in Maori (689/100,000 and 302.8/100,000 person-years) and Pacific Island populations (582.6/100,000 and 217.6/100,000 person-years) were much higher than those for the remaining population (435.4/100,000 and 200.9/100,000 person-years), particularly for males. The overall age-standardized hospital- based incidence rate for 2003/2004 was 342 per 100,000 per year (95% CI = 337–349/100,000), and 458 per 100,000 per year for Maori (95% CI = 438–479/100,000) with Maori males experiencing a peak in incidence between 30 and 34 years of age that was not evidenced for the wider population. Standardized hospital-based incidence rates for the total population and for Maori by age, gender and ICD-10 diagnostic codes are also examined.
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                Author and article information

                Contributors
                Conference
                July 2018
                July 2018
                : 1-4
                Affiliations
                [1 ]University of Waikato, Hamilton, New Zealand
                [2 ]University of Auckland, Auckland, New Zealand
                Article
                10.14236/ewic/HCI2018.71
                © Hinze et al. Published by BCS Learning and Development Ltd. Proceedings of British HCI 2018. Belfast, UK.

                This work is licensed under a Creative Commons Attribution 4.0 Unported License. To view a copy of this license, visit http://creativecommons.org/licenses/by/4.0/

                Proceedings of the 32nd International BCS Human Computer Interaction Conference
                HCI
                32
                Belfast, UK
                4 - 6 July 2018
                Electronic Workshops in Computing (eWiC)
                Human Computer Interaction Conference
                Product
                Product Information: 1477-9358BCS Learning & Development
                Self URI (journal page): https://ewic.bcs.org/
                Categories
                Electronic Workshops in Computing

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