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

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

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

The Hubble Constant

Considerable progress has been made in determining the Hubble constant over the past two decades. We discuss the cosmological context and importance of an accurate measurement of the Hubble constant, and focus on six high-precision distance-determination methods: Cepheids, tip of the red giant branch, maser galaxies, surface brightness fluctuations, the Tully-Fisher relation and Type Ia supernovae. We discuss in detail known systematic errors in the measurement of galaxy distances and how to minimize them. Our best current estimate of the Hubble constant is 73 +/-2 (random) +/-4 (systematic) km/s/Mpc. The importance of improved accuracy in the Hubble constant will increase over the next decade with new missions and experiments designed to increase the precision in other cosmological parameters. We outline the steps that will be required to deliver a value of the Hubble constant to 2% systematic uncertainty and discuss the constraints on other cosmological parameters that will then be possible with such accuracy.Comment: To be published in Annual Reviews of Astronomy and Astrophysics, Vol. 48, 2010, consisting of 79 pages, 13 figures, 2 table

The Pragmatic School of Thought in Open Science Practice: A Case Study of Multi-stakeholder Participation in Shaping the Future of Internet Governance

The internet is a disruptive technology that continues to define our modern world. However, numerous ethical challenges remain for internet governance going forward, e.g. surveillance capitalism, terrorism and radicalisation. The ‘pragmatic’ school of thought in open science advocates for collaboration between diverse stakeholder groups (e.g. citizens, academics, practitioners, policymakers) to ensure an informed, and positive imprint for change. However, our understanding of how open science can be used for assimilating knowledge on complex socio-political issues remains nascent. To address this gap, we present findings from ‘We, the Internet’, a global consultation project which utilised open science practices such as stakeholder-led evaluations and open access publications to engage stakeholders in dialogue around the future of internet governance. Our findings discuss emergent themes on the future of internet governance, and highlight the potential of open science to mobilise groups and combat public scepticism in policy-making

Open e-learning platforms and the design–reality gap : an affordance theory perspective

Purpose The dropout rates of open e-learning platforms are often cited as high as 97%, with many users discontinuing their use after initial acceptance. This study aims to explore this anomaly through the lens of affordances theory, revealing design-reality gaps between users' diverse goals and the possibilities for action provided by an open IT artefact. Design/methodology/approach A six-month case study was undertaken to investigate the design implications of user-perceived affordances in an EU sustainability project which developed an open e-learning platform for citizens to improve their household energy efficiency. Thematic analysis was used to reveal the challenges of user continuance behaviour based on how an open IT artefact supports users in achieving individual goals (e.g. reducing energy consumption in the home) and collective goals (lessening the carbon footprint of society). Findings Based on the findings, the authors inductively reveal seven affordances related to open e-learning platforms: informing, assessment, synthesis, emphasis, clarity, learning pathway and goal-planning. The findings centre on users' perception of these affordances, and the extent to which the open IT artefact catered to the goals and constraints of diverse user groups. Open IT platform development is further discussed from an iterative and collaborative perspective in order to explore different possibilities for action. Originality/value The study contributes towards research on open IT artefact design by presenting key learnings on how the designers of e-learning platforms can bridge design-reality gaps through exploring affordance personalisation for diverse user groups. This can inform the design of open IT artefacts to help ensure that system features match the expectations and contextual constraints of users through clear action-oriented possibilities.Peer reviewe

Open E-Learning Platforms and the Design-Reality Gap : Exploring the Impact of User-Perceived Functional Affordances

Peer reviewe

Teaching Tip: Embedding sustainability in Information Systems Design Education

Sustainability refers to the achievement of present needs without compromising the ability of future generations to meet their own needs. While prior research has highlighted the potential of Information Systems (IS) to support sustainability objectives - for instance, through supporting eco-efficient work practices and democratising healthcare access - our understanding of how to integrate the United Nation’s Sustainable Development Goals (SDGs) as a core aspect of IS teaching and curricula remains nascent. This teaching tip presents a pedagogical design and teaching method for embedding sustainability in systems design education using design thinking and “active learning” techniques. We provide examples of how students translated the SDGs into design concepts that target real-world sustainability problems with feedback from subject matter experts. Recommendations are then provided for supporting students’ experiential journeys when exploring sustainability objectives in the classroom by providing opportunities for variation and experimentation

Organ-on-a-chip: current gaps and future directions.

As an emerging hot topic of the last decade, Organ on Chip (OoC) is a new technology that is attracting interest from both basic and translational scientists. The Biochemical Society, with its mission of supporting the advancement of science, with addressing grand challenges that have societal impact, has included OoC into their agenda to review the current state of the art, bottlenecks and future directions. This conference brought together representatives of the main stakeholders in the OoC field including academics, end-users, regulators and technology developers to discuss and identify requirements for this new technology to deliver on par with the expectations and the key challenges and gaps that still need to be addressed to achieve robust human-relevant tools, able to positively impact decision making in the pharmaceutical industry and reduce overreliance on poorly predictive animal models

Bioavailable insulin-like growth factor-I as mediator of racial disparity in obesity-relevant breast and colorectal cancer risk among postmenopausal women

Bioavailable insulin-like growth factor (IGF)-I interacts with obesity and exogenous estrogen in a racial disparity in obesity-related cancer risk, yet their interconnected pathways are not fully characterized. We investigated whether circulating bioavailable IGF-I acted as a mediator of the racial disparity in obesity-related cancers such as breast and colorectal (CR) cancers and how obesity and estrogen use regulate this relationship