The dark side of digitalization and social media platform governance: a citizen engagement study
Internet Research
PurposeSocial media platforms are a pervasive technology that continues to define the modern worl... more PurposeSocial media platforms are a pervasive technology that continues to define the modern world. While social media has brought many benefits to society in terms of connection and content sharing, numerous concerns remain for the governance of social media platforms going forward, including (but not limited to) the spread of misinformation, hate speech and online surveillance. However, the voice of citizens and other non-experts is often missing from such conversations in information systems literature, which has led to an alleged gap between research and the everyday life of citizens.Design/methodology/approachThe authors address this gap by presenting findings from 16 h of online dialog with 25 citizens on social media platform governance. The online dialog was undertaken as part of a worldwide consultation project called “We, the internet”, which sought to provide citizens with a voice on a range of topics such as “Digitalization and Me,” “My Data, Your Data, Our Data” and “A ...
European Conference on Information Systems, Jun 14, 2021
Recorded usage rates of open e-learning platforms are often low, with many users discontinuing th... more Recorded usage rates of open e-learning platforms are often low, with many users discontinuing their use after initial acceptance. One often cited reason for this acceptance-discontinuance anomaly is the design-reality gap between users' diverse needs and the designed features of an open e-learning platform. To explore the challenges of user continuance behaviour we adopt the lens of 'functional affordances', the possibilities for action that an open IT artefact provides users for achieving individual and collective goals. We investigate the design implications of user-perceived affordances based on findings from an EU sustainability project which developed an open e-learning platform for citizens to improve household energy efficiency. Findings showcase how open e-learning users and designers perceive seven interrelated affordances differently: Informing, Assessment, Synthesis, Emphasis, Accessibility, Navigation, and Goal-planning. We put forward recommendations on how designers of open IT artefacts can bridge design-reality gaps by exploring affordance personalisation for diverse user groups.
How can IS researchers adopt Open Science practices into their research workflows?
As part of the "Open Science Practices in Information Systems Research" minitrack at HI... more As part of the "Open Science Practices in Information Systems Research" minitrack at HICSS 54, a synchronous workshop was created to answer the following question: how can IS researchers adopt Open Science practices into their research workflows?
Communications of the Association for Information Systems, 2020
Information Systems (IS) research is often conducted under the assumption that technology use lea... more Information Systems (IS) research is often conducted 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. It is therefore not surprising that examples abound of where technology use has failed ‘to make the world a better place’, or worse still has contributed towards unintended negative outcomes. In light of 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 which combined ‘blended’ face-to-face and online participatory techniques. The case study relates to a large-scale consultation undertaken in a 24-month European project involving 30 countries. The project engaged over 1,500 stakeholders in the co-creation of future research agendas for the European Union. We discuss case study findings using Stilgoe, Owen, & Macnaghten’s (2013) RRI framework (Anticipation, Reflexivity, Inclusion, Deliberation, Responsiveness) and reflect on lessons learned for responsible IS research going forward.
PurposeThe dropout rates of open e-learning platforms are often cited as high as 97%, with many u... more PurposeThe 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/approachA 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).FindingsBased on the findings, the authors inductively reveal seven affordances related to open ...
Hear our voice! The digitalization of life has transformed what we believe, how we think, feel an... more Hear our voice! The digitalization of life has transformed what we believe, how we think, feel and act. Much of this digitalization of life has been brought to citizens by large companies focused on connecting us via internet platforms. But, what do citizens need or wish for from the internet? Questions have been raised around the privacy, security, and integrity of information provided over the web. However, if the voice of citizens is missing, we cannot make an imprint for change. 'We, the Internet' is a global consultation project which aims to redress this imbalance by asking citizens their thoughts and feelings on the internet. Their input will help to shape this technology for a better future. The citizen participation events and forecasting methods, aim to question ideas on the digitalization of life – what are citizen's views on the internet, its opportunities, and risks? How do citizens feel about the prevalence of disinformation? What is the role of artificial ...
The internet is a disruptive technology that continues to define our modern world. However, numer... more 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 scienc...
Beyond a “Take It” or “Leave It” Approach to eConsent Design on Health Social Networks
International Journal of Patient-Centered Healthcare, 2020
With the proliferation of eHealth resources promoting health data storage, analysis, and dissemin... more With the proliferation of eHealth resources promoting health data storage, analysis, and dissemination, it is important for individuals to understand the implications of sharing their highly sensitive personal health information (PHI) online. However, uncertainty remains about the level of individual awareness and understanding when sharing PHI on health social networks (HSN). This article explores individuals' emotion and cognition in the provision of eConsent for PHI on a HSN focusing on individual engagement of emotion pre- and post-registration. Prior to participants reading the HSN's privacy policy (PP) and terms and conditions (T&Cs), a ‘just click' behavior was widely observed. This article shows that educating users about the implications of T&Cs and PPs changes their attitudes toward giving eConsent. By exploring individual emotion and cognition, this study proposes guidelines for software developers designing eConsent for HSNs.
Proceedings of the Annual Hawaii International Conference on System Sciences, 2021
The internet is a disruptive technology that continues to define our modern world. However, numer... more 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.
Social networking sites capture, store, analyse and exploit personal data resulting in heightened... more 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) t...
Information Systems (IS) research is often conducted under the assumption that technology use lea... more Information Systems (IS) research is often conducted 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. It is therefore not surprising that examples abound of where technology use has failed ‘to make the world a better place’, or worse still has contributed towards unintended negative outcomes. In light of 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 which combined ‘blended’ face-to-face and online participatory techniques. The case study relates to a large-scale consultation undertaken in a 24-month European projec...
When joining a social network users are typically asked to register and supply their personal/pri... more 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, ...
Journal of Organizational and End User Computing, 2021
Health social networks (HSNs) allow individuals with health information needs to connect and disc... more Health social networks (HSNs) allow individuals with health information needs to connect and discuss health-related issues online. Political-technology intertwinement (e.g. GDPR and Digital Technology) highlights that users need to be aware, understand, and willing to provide electronic consent (eConsent) when sharing personal information online. The objective of this study is to explore the ‘As-Is’ factors which impact individuals’ decisional autonomy when consenting to the privacy policy (PP) and Terms and Conditions (T&Cs) on a HSN. We use a Situational Awareness (SA) lens to examine decision autonomy when providing eConsent. A mixed-methods approach reveals that technical and privacy comprehension, user perceptions, and projection of future consequences impact participants’ decision autonomy in providing eConsent. Without dealing with the privacy paradox at the outset, decision awareness and latterly decision satisfaction is negatively impacted. Movement away from clickwrap onli...
Klinika plicních nemocí a tuberkulózy, FN a LF UP Olomouc Adjuvantní chemoterapie je standardní m... more Klinika plicních nemocí a tuberkulózy, FN a LF UP Olomouc Adjuvantní chemoterapie je standardní metodou nemalobuněčného karcinomu plic (NSCLC) u stadií IB (u nádorů od 4 cm v průměru), II a IIIA. Doporučení se opírá o výsledky řady studií fáze 3 a rozsáhlých metaanalýz, které potvrdily vliv adjuvantní chemoterapie na snížení relativního rizika úmrtí i absolutní zlepšení pětiletého přežití. Existuje několik populačních i regionálních studií, které hodnotí výsledky podávání adjuvantní chemoterapie mimo klinické studie. Liší se především zastoupením pacientů, jejichž výběr není ovlivněn exkluzivními kritérii randomizovaných studií a jejich zdravotní stav odpovídá běžné populaci. V klinické praxi je možno diskutovat o přínosu adjuvantní chemoterapie na jedné straně a vedlejších účincích na straně druhé. Současné snahy směřují ke zlepšení účinnosti a ke zpřesnění výběru nemocných. Jsou hledány prognostické a prediktivní biomarkery, které by umožnily personalizaci adjuvantní chemoterapie. Objevily se první práce ukazující možnosti podávání biologicky cílené léčby nebo imunoterapie u nemocných s NSCLC po radikálním chirurgickém výkonu. Klíčová slova: adjuvantní chemoterapie, nemalobuněčný karcinom plic, personalizace, reálná praxe. Adjuvant chemotherapy is a standard treatment method for non-small cell lung cancer (NSCLC) in stages IB (in tumours ≥ 4 cm in diameter), II, and IIIA. The recommendation is based on the results of a series of phase 3 trials and large meta-analyses that have confirmed the effect of adjuvant chemotherapy on the reduction in the relative risk of death and absolute improvement in fiveyear survival rates. There have been several population-based as well as regional studies evaluating the results of administration of adjuvant chemotherapy outside clinical trials. They mainly differ in the inclusion of patients whose selection is not influenced by exclusion criteria of randomized trials and whose health status corresponds to the general population. In the clinical practice, it is possible to discuss the benefit of adjuvant chemotherapy on the one hand and the rates of adverse effects on the other hand. Current efforts are aimed at improving efficacy and refining patient selection. Prognostic and predictive biomarkers are sought that would enable personalization of adjuvant chemotherapy. There have been initial studies showing the possibilities of delivering biologically targeted therapy or immunotherapy in patients with NSCLC after radical surgery.
Situation Awareness can offer the potential for conscious dynamic reflection. In an era of online... more Situation Awareness can offer the potential for conscious dynamic reflection. In an era of online health data sharing, it is becoming increasingly important that users of health social networks (HSNs) have the information necessary to make informed decisions as part of the registration process and in the provision of eConsent. This research aims to leverage an adapted Situation Awareness (SA) model to explore users' decision making processes in the provision of eConsent. PatientsLikeMe - HSN platform was used to investigate these behaviours. A mixed methods approach was taken. This involved the observation of registration behaviours followed by a questionnaire and focus group/s. Early results suggest that users are apt to automatically accept eConsent, and only later consider the long-term implications of sharing their personal health information. Further steps are required to continue developing knowledge and understanding of this important eConsent process. The next step in th...
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Papers by Wendy Rowan