scholarly journals Data sharing in the age of predictive psychiatry: An adolescent perspective

Author(s):  
Gabriela Pavarini ◽  
Aleksandra Yosifova ◽  
Keying Wang ◽  
Benjamin Wilcox ◽  
Nastja Tomat ◽  
...  

ABSTRACTBackgroundAdvances in genetics and digital phenotyping in psychiatry have given rise to testing services targeting young people, which claim to predict psychiatric outcomes before difficulties emerge. These services raise several ethical challenges surrounding data sharing and information privacy.ObjectivesThis study aimed to investigate young people’s interest in predictive testing for mental health challenges, and their attitudes towards sharing biological, psychosocial and digital data for such purpose.MethodsEighty UK adolescents aged 16-18 participated in the study. Participants took part in a digital role-play where they played the role of clients of a fictional predictive psychiatry company and chose what sources of personal data they wished to provide for a risk assessment. After the role-play, participants reflected upon their choices during a peer-led interview.FindingsParticipants saw multiple benefits in predictive testing services, but were highly selective with regards to type the data they were willing to share. Largely due to privacy concerns, digital data sources such as social media or Google search history were less likely to be shared than psychosocial and biological data, including school grades and one’s DNA. Participants were particularly reluctant to share digital data with schools (but less so with health systems).ConclusionsEmerging predictive psychiatric services are valued by young people; however, these services must consider privacy vs. utility trade-offs from the perspective of different stakeholders, including adolescents.Clinical implicationsRespecting adolescents’ need for transparency, privacy and choice in the age of digital phenotyping is critical to the responsible implementation of predictive psychiatric services.

2021 ◽  
Vol 66 (Special Issue) ◽  
pp. 121-121
Author(s):  
David M. Lyreskog ◽  
◽  
Gabriela Pavarini ◽  
Edward Jacobs ◽  
Vanessa Bennett ◽  
...  

"Across the globe the phenomenon of digital phenotyping – the collection and analysis of digital data for mental health – is growing increasingly popular within the education sector. Schools enter collaborations with health care providers, often with the aim to support young people and to reduce the risk for severe mental health challenges, self-harm, and suicide. In developing technologies for these purposes, algorithms and artificial intelligence (broadly construed) could be utilized to provide as rich and accurate data as possible. The data can then be used to flag up at-risk individuals within the system. Despite the increasing interest in digital mental health tools in many educational systems, there has been remarkably little written about the ethical issues that accompany the emergence of digital phenotyping. Arguably more alarming is that almost no research has been conducted on the acceptability and ethics of these technologies in stakeholder populations: we have not asked young people about their values in this context. In this paper, we present results from a large quantitative study from the UK, showing what young people value and choose in scenarios involving digital phenotyping in schools. We highlight clear discrepancies between what young people value – and how they conceptualize those values – and how the literature describes the ethical implications of related technologies in schools. We argue that policymakers and ethicists urgently need to learn to recognize and respect the moral boundaries of young people. "


2014 ◽  
Vol 30 (2) ◽  
pp. 280-282
Author(s):  
Randolph James Brazier

AbstractSignificant progress has been made with respect to Education for Sustainable Development (ESD) in tertiary education institutions, particularly universities. There are also examples of ways in which sustainability has been incorporated into secondary schools and curricula, but with varying levels of success. ESD that has been incorporated in secondary schools has been shown to engage students and give more context to the curriculum, as well as enable students to develop the critical thinking required to tackle the big issues that face the planet now and into the future.In the United Kingdom, while some aspects of sustainability have been introduced into the secondary school curriculum, they are often merged into other subjects and do not attract as much attention as traditional subjects. Furthermore, sustainability emphasis varies between schools, exam boards and teachers, leading to differing levels of understanding among teenagers. As a result, it could be argued that some young people fail to engage with global issues, which could be contributing towards the lower rates of young people voting in the United Kingdom. Promoting sustainable development, and how engineering can contribute towards it, could also potentially help reverse the decline in engineering student entries at universities, by attracting more interest to the engineering field. Thus, the question is raised as to how sustainability knowledge can be improved among teenagers.The research investigated the scale and quality of ESD at secondary schools in the United Kingdom and recommended a range of solutions to improve sustainability teaching and thinking among teenagers. A range of research tools were used, including a literature and curriculum review, interviews and surveys with teachers and students, and a role-play case study.The research involved a survey being conducted with 475 UK secondary school students aged 12–18 years. The survey was conducted to determine the current level of sustainability understanding of the students, where they learned about it, their preferences relating to issues facing the Earth, and how they think sustainability teaching could be improved. Surveys were purposely open ended, and teachers were instructed not to give prompts prior to the survey, to enable an accurate reflection of students’ knowledge. Results of the surveys varied across age group, school, overall attainment levels of students and exam boards. In general, results showed that while students are interested and knowledgeable about current issues, their level of understanding of sustainability is poor to moderate, and they want it to be taught in more subjects.A gap analysis was then conducted with a curriculum review, survey results and interviews with teachers as inputs. The aim of the analysis was to determine the difference between a desirable level of knowledge and teaching of sustainability, and current practice. Among other things, the analysis indicated that interactive learning would be beneficial, and thus a role play, set in Cambridge and covering environmental, social and economic aspects, was designed and run at two schools in Cambridge. An element of competition was included, as well as a relatively open set of rules, to invoke creative solutions. Observation during the game indicated engaged students. Feedback from students indicated that the game was a fun and useful learning tool. Feedback from teachers was also positive, indicating that interactive teaching tools, like role plays, class debates and field experiments, can be very valuable towards teaching students about the complexities of sustainability.After the role plays, the students were surveyed with identical questions to the initial survey. Results were compared, and sustainability knowledge and the ability to identify environmental issues was seen to increase significantly, far more so than originally expected. This increase in knowledge was highlighted by the students themselves in subsequent feedback sessions.Finally, steps were proposed to improve sustainability education that could be implemented by schools and teachers or at the UK National Curriculum level: •a ‘Sustainability Week’ or sustainability short course to be run at early secondary school, with the aim to give students a holistic overview of sustainability;•aspects of sustainability, including real-world examples, to be included in all subjects and lead on from the short course;•interactive learning tools to be strongly encouraged and made available to all teachers;•training and support to be provided to teachers to improve understanding and ability to teach sustainability;•extra-curricular sustainability activities to be offered at all schools. These steps, along with continual lines of communication and feedback between politicians, the public, industry, students and educators, will ensure that students understand sustainability and develop critical ways of thinking, leading to a more engaged generation.


Author(s):  
Soroosh Nazem ◽  
Valeria Bruni ◽  
Elena Fabris ◽  
Alan Marcus ◽  
Barbara Melis ◽  
...  
Keyword(s):  

Author(s):  
Mark F. St. John ◽  
Woodrow Gustafson ◽  
April Martin ◽  
Ronald A. Moore ◽  
Christopher A. Korkos

Enterprises share a wide variety of data with different partners. Tracking the risks and benefits of this data sharing is important for avoiding unwarranted risks of data exploitation. Data sharing risk can be characterized as a combination of trust in data sharing partners to not exploit shared data and the sensitivity, or potential for harm, of the data. Data sharing benefits can be characterized as the value likely to accrue to the enterprise from sharing the data by making the enterprise’s objectives more likely to succeed. We developed a risk visualization concept called a risk surface to support users monitoring for high risks and poor risk-benefit trade-offs. The risk surface design was evaluated in a series of two focus groups conducted with human factors professionals. Across the two studies, the design was improved and ultimately rated as highly useful. A risk surface needs to 1) convey which data, as joined data sets, are shared with which partners, 2) convey the degree of risk due to sharing that data, 3) convey the benefits of the data sharing and the trade-off between risk and benefits, and 4) be easy to scan at scale, since enterprises are likely to share many different types of data with many different partners.


Author(s):  
Sherwood C.. Frey ◽  
Dana R. Clyman

Voyager Inn International (Bethesda) is negotiating a master contract with TourAmerica, an international tour operator, for hotel rooms during the 1995 tourist season. Issues under consideration include number of rooms during peak, mid-, and off-periods; room rates; breakfast prices; and the cost of ancillary services. The hotel manager is evaluated on the basis of several criteria, including adjusted daily rates, occupancy rates, and food and beverage profitability. To facilitate trade-offs among the various criteria, the manager articulates a utility scheme. This case is a role-play exercise, and must be used in conjunction with “TourAmerica” (UVA-QA-0464). Reporting forms for the evaluation of alternative contracts are provided with each case.


2019 ◽  
Author(s):  
Scott Barnett ◽  
Kit Huckvale ◽  
Helen Christensen ◽  
Svetha Venkatesh ◽  
Kon Mouzakis ◽  
...  

UNSTRUCTURED In this viewpoint we describe the architecture of, and design rationale for, a new software platform designed to support the conduct of digital phenotyping research studies. These studies seek to collect passive and active sensor signals from participants' smartphones for the purposes of modelling and predicting health outcomes, with a specific focus on mental health. We also highlight features of the current research landscape that recommend the coordinated development of such platforms, including the significant technical and resource costs of development, and we identify specific considerations relevant to the design of platforms for digital phenotyping. In addition, we describe trade-offs relating to data quality and completeness versus the experience for patients and public users who consent to their devices being used to collect data. We summarize distinctive features of the resulting platform, InSTIL (Intelligent Sensing to Inform and Learn), which includes universal (ie, cross-platform) support for both iOS and Android devices and privacy-preserving mechanisms which, by default, collect only anonymized participant data. We conclude with a discussion of recommendations for future work arising from learning during the development of the platform. The development of the InSTIL platform is a key step towards our research vision of a population-scale, international, digital phenotyping bank. With suitable adoption, the platform will aggregate signals from large numbers of participants and large numbers of research studies to support modelling and machine learning analyses focused on the prediction of mental illness onset and disease trajectories.


2021 ◽  
Vol 9 ◽  
Author(s):  
Samira Yousefinaghani ◽  
Rozita Dara ◽  
Samira Mubareka ◽  
Shayan Sharif

The ongoing COVID-19 pandemic has posed a severe threat to public health worldwide. In this study, we aimed to evaluate several digital data streams as early warning signals of COVID-19 outbreaks in Canada, the US and their provinces and states. Two types of terms including symptoms and preventive measures were used to filter Twitter and Google Trends data. We visualized and correlated the trends for each source of data against confirmed cases for all provinces and states. Subsequently, we attempted to find anomalies in indicator time-series to understand the lag between the warning signals and real-word outbreak waves. For Canada, we were able to detect a maximum of 83% of initial waves 1 week earlier using Google searches on symptoms. We divided states in the US into two categories: category I if they experienced an initial wave and category II if the states have not experienced the initial wave of the outbreak. For the first category, we found that tweets related to symptoms showed the best prediction performance by predicting 100% of first waves about 2–6 days earlier than other data streams. We were able to only detect up to 6% of second waves in category I. On the other hand, 78% of second waves in states of category II were predictable 1–2 weeks in advance. In addition, we discovered that the most important symptoms in providing early warnings are fever and cough in the US. As the COVID-19 pandemic continues to spread around the world, the work presented here is an initial effort for future COVID-19 outbreaks.


2021 ◽  
Vol 3 ◽  
Author(s):  
Claudette Pretorius ◽  
David Coyle

Young adulthood represents a sensitive period for young people's mental health. The lockdown restrictions associated with the COVID-19 pandemic have reduced young people's access to traditional sources of mental health support. This exploratory study aimed to investigate the online resources young people were using to support their mental health during the first lockdown period in Ireland. It made use of an anonymous online survey targeted at young people aged 18–25. Participants were recruited using ads on social media including Facebook, Twitter, Instagram, and SnapChat. A total of 393 respondents completed the survey. Many of the respondents indicated that they were using social media (51.4%, 202/393) and mental health apps (32.6%, 128/393) as sources of support. Fewer were making use of formal online resources such as charities (26%, 102/393) or professional counseling services (13.2%, 52/393). Different social media platforms were used for different purposes; Facebook was used for support groups whilst Instagram was used to engage with influencers who focused on mental health issues. Google search, recommendations from peers and prior knowledge of services played a role in how resources were located. Findings from this survey indicate that digital technologies and online resources have an important role to play in supporting young people's mental health. The COVID-19 pandemic has highlighted these digital tool's potential as well as how they can be improved to better meet young people's needs.


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