Exploring user behaviours when providing electronic consent on Health Social Networks: a ‘Just Tick Agree’ approach

In an online world, the distinction between public and private is becoming increasingly blurred with rising concerns about the privacy and security of personal health information. The aim of this study is to explore electronic consent (eConsent) on a Health Social Network (HSN) – PatientsLikeMe - to improve both the form and accessibility of contractual information presented to HSN users. Participants registered on this HSN and their interaction/behaviours was observed when agreeing to the site’s Terms and Conditions (T&C’s) and Privacy Policy (PP) documents. Focus group discussions were used to help us understand how and why certain events occurred. Several themes emerged from this data - ‘Just Tick Agree’ phenomenon, perceived societal benefits for the public good, data privacy concerns and emotional drivers towards eConsent. By achieving a deeper understanding of the eConsent process to an HSN, contributions are presented for both theory and practice. We argue that the complex language used for T&C’s and PP statements when simplified would increase user knowledge, awareness and understanding. Furthermore, HSN user behaviours (i.e. ‘Just Tick Agree’) must change when registering on HSNs and, developers of HSNs should enable user choice on registration by changing how users’ control their personal health-related data

Privacy by Design: informed consent and Internet of Things for smart health

Check: I accept the terms and conditions and privacy policy statements associated with this technological artefact! The informed consent process is becoming more of a challenge with the emergence of Internet of Things (IoT) as data may be collected without the digital health citizen being aware. It is argued in this paper that the first phase for universal usability of IoT within the smart health domain is to ensure that digital health citizens (i.e. user of technology) are fully aware of what they are consenting to when they register an account with such technological artefacts. This point is further reinforced by the proposed ‘Privacy by Design’ requirements associated with the forthcoming General Data Protection Regulation (GDPR). This paper proposes some practical approaches which should be considered when designing and developing IoT for data collection and data sharing within the health domain

Blended Stakeholder Participation for Responsible Information Systems Research

Researchers often conduct information systems (IS) research under the assumption that technology use leads to positive outcomes for different stakeholders. However, many IS studies demonstrate limited evidence of having engaged with the stakeholders that they claim benefit and speak on behalf of. Therefore, we can unsurprisingly find many examples in which technology use failed to make the world a better place or, worse still, contributed towards unintended negative outcomes. Given these concerns, calls have recently emerged for responsible research and innovation (RRI) studies in IS to understand how different stakeholder groups can have a voice in complex socio-technical issues. In this paper, we take steps towards addressing this call by presenting case study findings from a responsible IS research project that combined “blended” face-to-face and online participatory techniques. The case study relates to a large-scale consultation in a 24-month European project that involved 30 countries. The project engaged over 1,500 stakeholders in co-creating future research agendas for the European Union. We discuss case study findings using Stilgoe, Owen, and Macnaghten’s (2013) framework and reflect on lessons learned for responsible IS research going forward

Effective headache management in the aneurysmal subarachnoid patient: a literature review

Subarachnoid haemorrhage (SAH) is described throughout the literature as a devastating neurological disorder associated with significant mortality and morbidity rates, arising not just from the haemorrhage itself, but also as a result of the catastrophic multisystem sequelae that can accompany the condition. Rupture of an intracranial aneurysm accounts for up to 85% of instances of SAH, occurring in approximately 6–7 per 100,000 in most populations and costing an estimated £510 million annually in the United Kingdom alone (Rivero-Arias et al, 2010). Treatment of Aneurysmal Subarachnoid Haemorrhage (aSAH) includes prevention of re-bleeding, evacuation of space occupying haematomas, management of hydrocephalus and prevention of secondary cerebral insult. Headache has been highlighted as the predominant, most characteristic and often the only symptom of aSAH, its severity having a variety of physiological and psychological effects on the patient. This paper summarises the findings of a literature review conducted as part of a research study to examine existing practices in the assessment and management of headache in patients with aSAH in an Irish Neurosciences Centre. The review demonstrates that despite a wealth of published literature on the diagnosis and management of aSAH, evaluation and management of its main symptom, headache, remains suboptimal and under-researched. The lack of available literature demonstrates that such enquiry is both timely and necessary

Multi-century trends to wetter winters and drier summers in the England and Wales precipitation series explained by observational and sampling bias in early records

Globally, few precipitation records extend to the 18th century. The England Wales Precipitation (EWP) series is a notable exception with continuous monthly records from 1766. EWP has found widespread use across diverse fields of research including trend detection, evaluation of climate model simulations, as a proxy for mid-latitude atmospheric circulation, a predictor in long-term European gridded precipitation data sets, the assessment of drought and extremes, tree-ring reconstructions and as a benchmark for other regional series. A key finding from EWP has been the multi-centennial trends towards wetter winters and drier summers. We statistically reconstruct seasonal EWP using independent, quality-assured temperature, pressure and circulation indices. Using a sleet and snow series for the UK derived by Profs. Gordon Manley and Elizabeth Shaw to examine winter reconstructions, we show that precipitation totals for pre-1870 winters are likely biased low due to gauge under-catch of snowfall and a higher incidence of snowfall during this period. When these factors are accounted for in our reconstructions, the observed trend to wetter winters in EWP is no longer evident. For summer, we find that pre-1820 precipitation totals are too high, likely due to decreasing network density and less certain data at key stations. A significant trend to drier summers is not robustly present in our reconstructions of the EWP series. While our findings are more certain for winter than summer, we highlight (a) that extreme caution should be exercised when using EWP to make inferences about multi-centennial trends, and; (b) that assessments of 18th and 19th Century winter precipitation should be aware of potential snow biases in early records. Our findings underline the importance of continual re-appraisal of established long-term climate data sets as new evidence becomes available. It is also likely that the identified biases in winter EWP have distorted many other long-term European precipitation series

Use of Galleria mellonella larvae to evaluate the in vivo anti-fungal activity of [Ag2(mal)(phen)3]

Larvae of the insect Galleria mellonella were employed to assess the in vivo antifungal efficacy of ([Ag2(mal)(phen)3]), AgNO3 and 1,10- phenanthroline. Larvae pre-inoculated with these compounds were protected from a subsequent lethal infection by the yeast Candida albicans while larvae inoculated 1 and 4 h post-infection showed significantly increased survival (P\0.01) compared to control larvae. Administration of these compounds resulted in an increase over 48 h in the density of insect haemocytes (immune cells) but there was no widespread activation of genes for antimicrobial peptides. This work demonstrates that G. mellonella larvae may be employed to ascertain the antifungal efficacy of silver(I) compounds and offers a rapid and effective means of assessing the in vivo activity of inorganic antimicrobial compounds

THE DARK SIDE OF RISK HOMEOSTASIS WHEN JOINING HEALTH SOCIAL NETWORKS

Social networking sites capture, store, analyse and exploit personal data resulting in heightened uncertainty and perceived risk around protecting our personal data. When this data involves personal health information (PHI) the risk factors increase. These risks can be discovered in both the design and presentation of Health Social Networking (HSN) services, as well as the actions of users when providing electronic consent (eConsent). How do users interact with technology and determine the potential risks to their PHI data? This paper seeks to explore users’ behaviours and reflections on risk taking when registering onto a HSN. Examining users’ registration behaviours, it is possible to explore users’ risk homeostasis when providing eConsent on a HSN. This paper focuses on understanding the users’ decision making process to the reading and comprehension of the Terms and Conditions (T&Cs), and Privacy Policy (PP) statements. A two-step approach was taken to collecting data, with 1) the observation of action followed by 2) a focus group discussion. This research sheds light into user’s assessment of future risk, the potentially dark side of sharing PHI and the preferred ways of operating for the user of these online communities. Keywords: Risk; Decision Making; eConsent; Health Social Networks (HSNs)

The Evil Side of Sharing Personal Health Information Online

When joining a social network users are typically asked to register and supply their personal/private information. As part of the registration process, users must confirm that they have read the terms and conditions of site use, as well as the privacy policy for that particular social network. Do people actually read these documents, and do they really understand what they are consenting to? When it comes to sharing personal health conditions with others online, it is worth considering who will have access to this valuable, sensitive data and how it will be used in the future. This research aims to improve the form and accessibility of contractual information presented to users of Health Social Networks (HSNs), by looking at alternative ways to engage and communicate these details on registration. Taking a mixed methods approach, this research observes registration behaviours and questions users on their engagement with eConsent through HSNs. Our aim is to elucidate the challenges, risks and potential dangers associated with sharing personal health information (PHI) using HSNs. This research proposes a list of guidelines to better support user’s decision making needs when choosing to register and providing personal health information to HSNs