Search

Receiving the diagnosis of a severe disease may present a traumatic event for patients and their families. To cope with the related challenges, digital interventions can be combined with traditional psychological support to help meet respective needs. We aimed to 1) discuss the most common consequences and challenges for resilience in Neuro Muscular Disease patients and family members and 2) elicit practical needs, concerns, and opportunities for digital platform use. We draw from findings of a transdisciplinary workshop and conference with participants ranging from the fields of clinical practice to patient representatives. Reported consequences of the severe diseases were related to psychosocial challenges, living in the nexus between physical development and disease progression, social exclusion, care-related challenges, structural and financial challenges, and non-inclusive urban design. Practical needs and concerns regarding digital platform use included social and professional support through these platforms, credibility and trust in online information, and concerns about privacy and informed consent. Furthermore, the need for safe, reliable, and expert-guided information on digital platforms and psychosocial and relationship-based digital interventions was expressed. There is a need to focus on a family-centered approach in digital health and social care and a further need in researching the suitability of digital platforms to promote resilience in the affected population. Our results can also inform city councils regarding investments in inclusive urban design allowing for disability affected groups to enjoy a better quality of life.

The emergence of big data science presents a unique opportunity to improve public-health research practices. Because working with big data is inherently complex, big data research must be clear and transparent to avoid reproducibility issues and positively impact population health. Timely implementation of solution-focused approaches is critical as new data sources and methods take root in public-health research, including urban public health and digital epidemiology. This commentary highlights methodological and analytic approaches that can reduce research waste and improve the reproducibility and replicability of big data research in public health. The recommendations described in this commentary, including a focus on practices, publication norms, and education, are neither exhaustive nor unique to big data, but, nonetheless, implementing them can broadly improve public-health research. Clearly defined and openly shared guidelines will not only improve the quality of current research practices but also initiate change at multiple levels: the individual level, the institutional level, and the international level.

Background: Receiving a diagnosis that leads to severe disability in childhood can cause a traumatic experience with long-lasting emotional stress for patients and family members. In recent decades, emerging digital technologies have transformed how patients or caregivers of persons with disabilities manage their health conditions. As a result, information (eg, on treatment and resources) has become widely available to patients and their families. Parents and other caregivers can use digital platforms such as websites or social media to derive social support, usually from other patients and caregivers who share their lived experiences, challenges, and successes on these platforms. However, gaps remain in our understanding of platforms that are most frequently used or preferred among parents and caregivers of children with disabilities. In particular, it is not clear what factors primarily drive or discourage engagement with these digital tools and what the main ethical considerations are in relation to these tools. Objective: We aimed to (1) identify prominent digital platforms used by parents or caregivers of children with disabilities; (2) explore the theoretical contexts and reasons for digital platform use, as well as the experiences made with using these platforms reported in the included studies; and (3) identify any privacy and ethical concerns emerging in the available literature in relation to the use of these platforms. Methods: We conducted a scoping review of 5 academic databases of English-language articles published within the last 10 years for diseases with childhood onset disability and self-help or parent/caregiver-led digital platforms. Results: We identified 17 papers in which digital platforms used by parents of affected children predominantly included social media elements but also search engines, health-related apps, and medical websites. Information retrieval and social support were the main reasons for their utilization. Nearly all studies we

Social media platforms are increasingly used across many population groups not only to communicate and consume information, but also to express symptoms of psychological distress and suicidal thoughts. The detection of suicidal ideation (SI) can contribute to suicide prevention. Twitter data suggesting SI have been associated with negative emotions (e.g., shame, sadness) and a number of geographical and ecological variables (e.g., geographic location, environmental stress). Other important research contributions on SI come from studies in neuroscience. To date, very few research studies have been conducted that combine different disciplines (epidemiology, health geography, neurosciences, psychology, and social media big data science), to build innovative research directions on this topic. This article aims to offer a new interdisciplinary perspective, that is, a Population Neuroscience perspective on SI in order to highlight new ways in which multiple scientific fields interact to successfully investigate emotions and stress in social media to detect SI in the population. We argue that a Population Neuroscience perspective may help to better understand the mechanisms underpinning SI and to promote more effective strategies to prevent suicide timely and at scale.

Spatial approaches to epidemiological research with big social media data provide tremendous opportunities to study the relationship between the socio-ecological context where these data are generated and health indicators of interest. Such research poses a number of ethical challenges, particularly in relation to issues such as privacy, informed consent, data security, and storage. While these issues have received considerable attention by researchers in relation to research for physical health purposes in the past 10 years, there have been few efforts to consider the ethical challenges of conducting mental health research, particularly with geo-referenced social media data. The aim of this article is to identify strengths and limitations of current recommendations to address the specific ethical issues of geo-referenced tweets for mental health research. We contribute to the ongoing debate on the ethical implications of big data research and also provide recommendations to researchers and stakeholders alike on how to tackle them, with a specific focus on the use of geo-referenced data for mental health research purposes. With increasing awareness of data privacy and confidentiality issues (even for non-spatial social media data) it becomes crucial to establish professional standards of conduct so that compliance with ethical standards of conducting research with health-related social media data can be prioritized and easily assessed.

This article describes the coaching strategies of the NESTORE e-coach, a virtual coach for promoting healthier lifestyles in older age. The novelty of the NESTORE project is the definition of a multi-domain personalized pathway where the e-coach accompanies the user throughout different structured and non-structured coaching activities and recommendations. The article also presents the design process of the coaching strategies, carried out including older adults from four European countries and experts from the different health domains, and the results of the tests carried out with 60 older adults in Italy, Spain and The Netherlands.

In recent years, due to the rise in availability of unstructured big data and technological affordances, there has been a proverbial “explosion” of research within the field of sentiment analysis and affective computing, facilitating the study of in-situ communicated emotion and its accurate detection at an unprecedented scale. Increasingly the emotional dimension and its key important role is being recognized in e-coaching, with attempts at its integration within such systems. This chapter reviews the predominant extant models for representing affect, as well as emotion related states relevant to older persons’ experiences, including the state-of-art for their automated detection and integration within e-coaching systems. Given the approaches available, we describe how the NESTORE system addresses emotion recognition, self-tracking and subsequent feedback intended to help older adults make sense of their affective experiences across their daily life, as well as the role it can play in holistic e-coaching systems. Finally, from the NESTORE experience, we draw recommendations about how future e-coaching system could be implemented in the future to include the emotional dimension.

Natural disasters can have significant consequences for population mental health. Using a digital spatial epidemiologic approach, this study documents emotional changes over space and time in the context of a large-scale disaster. Our aims were to (a) explore the spatial distribution of negative emotional expressions of Twitter users before, during, and after Superstorm Sandy in New York City (NYC) in 2012 and (b) examine potential correlations between socioeconomic status and infrastructural damage with negative emotional expressions across NYC census tracts over time. A total of 984,311 geo-referenced tweets with negative basic emotions (anger, disgust, fear, sadness, shame) were collected and assigned to the census tracts within NYC boroughs between 8 October and 18 November 2012. Global and local univariate and bivariate Moran’s I statistics were used to analyze the data. We found local spatial clusters of all negative emotions over all disaster periods. Socioeconomic status and infrastructural damage were predominantly correlated with disgust, fear, and shame post-disaster. We identified spatial clusters of emotional reactions during and in the aftermath of a large-scale disaster that could help provide guidance about where immediate and long-term relief measures are needed the most, if transferred to similar events and on comparable data worldwide.

Virtual Coaches, also known as e-coaches, are a disruptive technology in healthcare. Indeed, among other usages, they might provide cost-effective solutions for increasing human wellbeing in different domains, such as physical, nutritional, cognitive, social, and emotional. This paper presents a systematic review of virtual coaches specifically aimed at improving or maintaining older adults' health in the aforementioned domains. Such digital systems assume various forms, from classic apps, to more advanced conversational agents or robots. Fifty-six articles describing a virtual coach for older adults and aimed at improving their wellbeing were identified and further analyzed. In particular, we presented how previous studies defined their virtual coaches, which behavioral change models and techniques they adopted and the overall system architecture, in terms of monitoring solutions, processing methods and modalities for intervention delivery. Our results show that few thorough evaluations of e-coaching systems have been conducted, especially regarding multi-domain coaching approaches. Through our analysis, we identified the wellbeing domains that should be addressed in future studies as well as the most promising behavior change models and techniques and coaching interfaces. Previous work illustrates that older adults often appreciate conversational agents and robots. However, the lack of a multidomain intervention approach in the current literature motivates us to seek to define future solutions., System Engineering

Virtual Coaches, also known as e-coaches, are a disruptive technology in healthcare. Indeed, among other usages, they might provide cost-effective solutions for increasing human wellbeing in different domains, such as physical, nutritional, cognitive, social, and emotional. This paper presents a systematic review of virtual coaches specifically aimed at improving or maintaining older adults' health in the aforementioned domains. Such digital systems assume various forms, from classic apps, to more advanced conversational agents or robots. Fifty-six articles describing a virtual coach for older adults and aimed at improving their wellbeing were identified and further analyzed. In particular, we presented how previous studies defined their virtual coaches, which behavioral change models and techniques they adopted and the overall system architecture, in terms of monitoring solutions, processing methods and modalities for intervention delivery. Our results show that few thorough evaluations of e-coaching systems have been conducted, especially regarding multi-domain coaching approaches. Through our analysis, we identified the wellbeing domains that should be addressed in future studies as well as the most promising behavior change models and techniques and coaching interfaces. Previous work illustrates that older adults often appreciate conversational agents and robots. However, the lack of a multidomain intervention approach in the current literature motivates us to seek to define future solutions.