Developing citizen science ecosystem:critical factors for quadruple helix stakeholders engagement

Purpose: The purpose of this paper is to provide answers regarding the factors that motivate or discourage the quadruple helix (QH) stakeholders and the wider public in citizen science (CS) activities. The research reveals a current overview of the perceptions, attitudes, concerns and motivation with regard to development of CS ecosystem in four countries: Greece, Lithuania, the Netherlands and Spain. Design/methodology/approach: The researchers deploy a mixed methodology, entailing an in-depth literature review and a large-scale quantitative survey (approximately 2,000 citizens) targeting QH stakeholders and general public from the local national ecosystems. The results contain both descriptive statistics and statistical analysis per country. After the comprehensive overview of drivers and barriers regarding the participation in CS activities in general, the focus is narrowed down on the engagement motivation of different QH stakeholders and the differences in enabling/hindering factors at the local ecosystems. Findings: Depending on the country and the pre-existing level of CS maturity, the results provide a complicated network of factors that unlock or block participation in CS activities. These factors include, to name a few, political maturity, civic engagement, technological infrastructures, economic growth, culture of stakeholder collaboration, psychological stimulus and surplus of resources. The implications of the findings necessitate the alignment of the envisioned CS ecosystem with the local dynamics in each country. Research limitations/implications: The quantitative nature of the survey method, limited sample size and only four countries context are noted as limitations of the study and offer future research potential for longitudinal settings and mixed-methods studies. Originality/value: The results contribute to the wider literature on CS that focuses on perspectives, possibilities and differences in local contexts with respect to the public engagement by developing CS ecosystem. At the same time, its added value lies in the overall practical proposition, and how the latter can effectively and efficiently attract and retain different stakeholder groups and citizens, under a collaborative approach.</p

The parallel structure of science and art

Innovative visualization techniques from the worlds of medicine and industry are making the invisible visible. The visual language of digital medical imaging is part of our perception of the world. The internal worlds of the body, objects and landscapes are becoming available for artists to explore. Sabine E. Wildevuur works in the inter- and cross disciplinary field of (biomedical) science and artistic research. In her recent book ‘Invisible Vision’, she reflects on various ways of bringing science and the arts together. The digital worlds of computer animation, virtual reality, augmented reality and digital games are merging with those of science, with varying results.. Could Science learn from the Arts?<br/

Towards a framework for the monitoring and evaluation of citizen science for health

Monitoring and evaluating projects is important to ensure that the project proceeds smoothly and desired goals and deliverables are met. Several monitoring and evaluation frameworks have been developed to evaluate citizen science projects. Citizen science for health is an upcoming domain within citizen science; however, citizen science for health differs from other domains, such as biodiversity or geo-science, with regards to ethics and privacy of health data. Therefore, it is imperative that a framework be developed that can appropriately monitor and evaluate citizen science for health projects. Based upon one of the existing monitoring and evaluation frameworks, a first outline of such a framework has been developed. A roundtable session at the Engaging Citizen Science Conference 2022 was used to elicit possible topics for the ways in which citizen science for health distinguishes itself from other domains of citizen science. The topics mentioned by the participants were, amongst others: ethics, reciprocity, data privacy, transdisciplinary cooperation, personal and societal health outcomes, education of different stakeholders, and working towards sustainability and taking steps to create an impact with the outcomes of citizen science research. The roundtable discussions provided relevant input on areas where the current outline might be adapted when working towards a framework for the monitoring and evaluation of citizen science for health and wellbeing. Focus groups are foreseen to co-create a framework 1.0 for monitoring and evaluating citizen science for health projects

Scottie: Social connectedness in healthcare

In this paper we present Scottie, a research and design project in which Media Lab Waag Society explores the role of media ICT in supporting existing social relationships of people who are physically or geographically separated. Media ICT is applied to increase social interaction through social connectedness. The authors use the term social connectedness to describe the experience of being part of a social group. This experience is in normal circumstances reinforced by non-verbal, social-emotional stimuli that in our everyday interactions confirm that we are part of this relationship. We describe the sensibilities of our specific user group (children, aged 10 to 15, who have to stay in a hospital for a longer period of time, and are disconnected from their social circle) and the design challenges we face when mediating social connectedness. The prototype underwent several changes in an iterative design process, in which the users played an important role. The user evaluation identified a potentially promising new target audience, namely elderly people who live in nursing homes and are disconnected from their loved ones

Information and communication technology enabling partnership in person-centred diabetes management: Building a theoretical framework from an inductive case study in the Netherlands

Objectives The aim of this paper is to construct a theoretical framework for information and communication technology (ICT)-enabled partnership towards diabetes management. Design We conducted an inductive case study and held interviews on the development and use of an artificial pancreas (AP) system for diabetes management. Setting The study was carried out in the Netherlands with users of an AP system. Participants We interviewed six patients with type 1 diabetes, five healthcare professionals (two medical specialists and three diabetes nurses), and one policy advisor from the Ministry of Health, Welfare and Sport. Results We built a new theoretical framework for ICT-enabled person-centred diabetes management, covering the central themes of self-managing the disease, shared analysing of (medical) data and experiencing the partnership. We found that ICT yielded new activities of data sharing and a new role for data professionals in the provision of care as well as contributed to carefree living thanks to the semiautomated management enabled by the device. Our data suggested that to enable the partnership through ICT, organisational adjustments need to be made such as the development of new ICT services and a viable financial model to support these services. Conclusion The management of diabetes through ICT requires an adjustment of the partnership between persons with the chronic condition and the healthcare professional(s) in such a way that the potential for self-managing the condition by analysing the newly available (medical) data (from the AP system) together leads to an experience of partnership between patients and healthcare professionals.Methodology and Organisation of Desig

Trust in telemedicine portals for rehabilitation care: an exploratory focus group study with patients and healthcare professionals

Background: For many eServices, end-user trust is a crucial prerequisite for use. Within the context of Telemedicine, the role of trust has hardly ever been studied. In this study, we explored what determines trust in portals that facilitate rehabilitation therapy, both from the perspective of the patient and the healthcare professional. Methods: We held two focus groups with patients (total n = 15) and two with healthcare professionals (total n = 13) in which we discussed when trust matters, what makes up trust in a rehabilitation portal, what effect specific design cues have, and how much the participants trust the use of activity sensor data for informing treatment. Results: Trust in a rehabilitation portal is the sum of trust in different factors. These factors and what makes up these factors differ for patients and healthcare professionals. For example, trust in technology is made up, for patients, mostly by a perceived level of control and privacy, while for healthcare professionals, a larger and different set of issues play a role, including technical reliability and a transparent data storage policy. Healthcare professionals distrust activity sensor data for informing patient treatment, as they think that sensors are unable to record the whole range of movements that patients make (e.g., walking and ironing clothes). Conclusions: The set of factors that affect trust in a rehabilitation portal are different from the sets that have been found for other contexts, like eCommerce. Trust in telemedicine technology should be studied as a separate subject to inform the design of reliable interventions