Pay More Attention : a national mixed methods study to identify the barriers and facilitators to ensuring equal access to high-quality hospital care and services for children and young people with and without learning disabilities and their families

INTRODUCTION: Despite evidence of health inequalities for adults with intellectual disability (ID) there has yet to be a comprehensive review of how well hospital services are meeting the needs of children and young people (CYP) with ID and their families. We do not know how relevant existing recommendations and guidelines are to CYP, whether these are being applied in the paediatric setting or what difference they are making. Evidence of parental dissatisfaction with the quality, safety and accessibility of hospital care for CYP with ID exists. However, the extent to which their experience differs from parents of CYP without ID is not known and the views and experiences of CYP with ID have not been investigated. We will compare how services are delivered to, and experienced by CYP aged 5–15 years with and without ID and their families to see what inequalities exist, for whom, why and under what circumstances. METHODS AND ANALYSIS: We will use a transformative, mixed methods case study design to collect data over four consecutive phases. We will involve CYP, parents and hospital staff using a range of methods; interviews, parental electronic diary, hospital and community staff questionnaire, patient and parent satisfaction questionnaire, content analysis of hospital documents and a retrospective mapping of patient hospital activity. Qualitative data will be managed and analysed using NVivo and quantitative data will be analysed using parametric and non-parametric descriptive statistics. ETHICS AND DISSEMINATION: The study will run from December 2015 to November 2018. We have Health Authority Approval (IRAS project ID: 193932) for phase 1 involving staff only and ethical and Health Authority Approval for phases 2–4 (IRAS project ID: 178525). We will disseminate widely to relevant stakeholders, using a range of accessible formats, including social media. We will publish in international peer-reviewed journals and present to professional, academic and lay audiences through national and international conferences

Where is the Human in HDI?

This position paper views HDI from a human-centred perspective informed by the work of Martin Buber and Eric Fromm. Buber’s ideas of philosophical dialogue (Zank, 2020) concern how humans experience the world and themselves while Fromm’s principles of character orientation (Cherry, 2020) , concern how individuals relate to the world. We seek to discuss the associated relational dynamic at play between humans and data, setting out five questions as a provocation

Four Speculative Design F(r)ictions: Designing for Personal Data Awareness

Human Data Interaction (HDI) takes place within a data economy characterised by power imbalances that favour giant corporations that rely on deceptions comprising a form of privacy theatre. We present speculative design f(r)ictions as critical framing devices to help people engage with, reflect upon and understand obfuscated personal data processes, towards supporting their awareness and agency around personal data sharing. We discuss four concept designs we developed following workshop activities

Proglacial icings as indicators of glacier thermal regime : ice thickness changes and icing occurrence in Svalbard

Proglacial icings (also known as naled or aufeis) are frequently observed in the forefields of polar glaciers. Their formation has been ascribed to the refreezing of upwelling groundwater that has originated from subglacial melt, and thus the presence of icings has been used as evidence of polythermal glacier regime. We provide an updated analysis of icing occurrence in Svalbard and test the utility of icings as an indicator of thermal regime by comparing icing presence with: (1) mean glacier thickness, as a proxy for present thermal regime; and (2) evidence of past surge activity, which is an indicator of past thermal regime. A total of 279 icings were identified from TopoSvalbard imagery covering the period 2008-2012, of which 143 corresponded to icings identified by Bukowska-Jania and Szafraniec (2005) from aerial photographs from 1990. Only 46% of icings observed in 2008-2012 were found to occur at glaciers with thicknesses consistent with a polythermal regime, meaning a large proportion were associated with glaciers predicted to be of a cold or transitional thermal regime. As a result, icing presence alone may be an unsuitable indicator of glacier regime. We further found that, of the 279 glaciers with icings, 63% of cold-based glaciers and 64% of transitional glaciers were associated with evidence of surge activity. We therefore suggest that proglacial icing formation in Svalbard may reflect historical (rather than present) thermal regime, and that icings possibly originate from groundwater effusion from subglacial taliks that persist for decades following glacier thinning and associated regime change

Everyday digital traces

Our research responds to calls for more engagement with everyday personal data. We used a co-designed, fictional persona called Alex Smith to concretise and represent people's online information to help participants (through role-playing) reflect on data and digital traces. Drawing together four fields of scholarly research concerning personal data: digital traces and the digital self, datafication and dataveillance, mundane, everyday data and the data journey – our aim was to advance understandings of personal data by exploring ordinary people's seemingly innocuous digital traces generated through everyday online interactions. Our paper presents three key findings from our analysis: (1) how ordinary people cope with and manage everyday data; (2) the haunting effects and affects of peer-to-peer surveillance and (3) postdigital identities. We argue that greater attention needs to be paid to everyday digital traces – how they are understood, managed and revealed because this has implications for ordinary people, corporate entities and governments. We contribute to a gap in critical data studies literature that calls for further investigations into ordinary people's engagement with data. We also offer a method that can be adapted for and used with different participant groups, which also supports their awareness of cumulative functions of personal data and potential use by un/known actors

Tags, tagging, tagged, # - undisciplining organ-ization of [academic] bodies

We write as a collaborative mode of embodied writing that moves, tags, and re-sites us elsewhere, that mis/dis/aligns self-other, and permeates various stable body(boundaries). We write as a group of (un)bounded (virtual) bodies who aim to collectively create and tag arguments. We write as a collective body where materialities, ideas, discussions and writing become in the doing. Different relational collective practices shared here disturb, disperse, question, undo and undermine sole authorship and consider how tags work and what tags might produce when these objects/things shape our academic lives. While engaged in tagging we also considered how tags tug, how tags shape the ways we think, feel and experience our academic lives. How are we produced by tags? What do tags produce (in/on) us and in our embodied lives?

Revealing Cumulative Risks in Online Personal Information: A Data Narrative Study

When pieces from an individual’s personal information available online are connected over time and across multiple platforms, this more complete digital trace can give unintended insights into their life and opinions. In a data narrative interview study with 26 currently employed participants, we examined risks and harms to individuals and employers when others joined the dots between their online information. We discuss the themes of visibility and self-disclosure, unintentional information leakage and digital privacy literacies constructed from our analysis. We contribute insights not only into people’s difficulties in recalling and conceptualising their digital traces but of subsequently envisioning how their online information may be combined, or (re)identified across their traces and address a current gap in research by showing that awareness is lacking around the potential for personal information to be correlatedby and made coherent to/by others, posing risks to individuals, employers, and even the state. We touch on inequalities of privacy, freedom and legitimacy that exist for different groups with regard to what they make (or feel compelled to make) available online and we contribute to current methodological work on the use of sketching to support visual sense making in data narrative interviews. We conclude by discussing the need for interventions that support personal reflection on the potential visibility of combined digital traces to spotlight hidden vulnerabilities, and promote more proactive action about what is shared and not shared online

Revealing cumulative risks in online personal information : a data narrative study

When pieces from an individual's personal information available online are connected over time and across multiple platforms, this more complete digital trace can give unintended insights into their life and opinions. In a data narrative interview study with 26 currently employed participants, we examined risks and harms to individuals and employers when others joined the dots between their online information. We discuss the themes of visibility and self-disclosure, unintentional information leakage and digital privacy literacies constructed from our analysis. We contribute insights not only into people's difficulties in recalling and conceptualising their digital traces but of subsequently envisioning how their online information may be combined, or (re)identified across their traces and address a current gap in research by showing that awareness is lacking around the potential for personal information to be correlated by and made coherent to/by others, posing risks to individuals, employers, and even the state. We touch on inequalities of privacy, freedom and legitimacy that exist for different groups with regard to what they make (or feel compelled to make) available online and we contribute to current methodological work on the use of sketching to support visual sense making in data narrative interviews. We conclude by discussing the need for interventions that support personal reflection on the potential visibility of combined digital traces to spotlight hidden vulnerabilities, and promote more proactive action about what is shared and not shared online

Making sense of trifles : data narratives and cumulative data disclosure

The law does not concern itself with trifles. If a risk is deemed minimal, or an infraction negligible, invoking the authority of the law often seems unnecessary. However, there are increasingly fields of human activity where this principle leads to gaps in the protection neces- sary for a flourishing society. This paper reports findings and ideas from a research project in cumulative data disclosure, where an aggregation of in themselves harmless data points can expose the users of social media to significant personal risk