Sabine Wildevuur - Academia.edu (original) (raw)
Papers by Sabine Wildevuur
Journal of participatory medicine, Jul 7, 2017
Journal of Medical Internet Research, Mar 27, 2015
Background: Person-centered information and communication technology (ICT) could encourage patien... more Background: Person-centered information and communication technology (ICT) could encourage patients to take an active part in their health care and decision-making process, and make it possible for patients to interact directly with health care providers and services about their personal health concerns. Yet, little is known about which ICT interventions dedicated to person-centered care (PCC) and connected-care interactions have been studied, especially for shared care management of chronic diseases. The aim of this research is to investigate the extent, range, and nature of these research activities and identify research gaps in the evidence base of health studies regarding the "big 5" chronic diseases: diabetes mellitus, cardiovascular disease, chronic respiratory disease, cancer, and stroke. Objective: The objective of this paper was to review the literature and to scope the field with respect to 2 questions: (1) which ICT interventions have been used to support patients and health care professionals in PCC management of the big 5 chronic diseases? and (2) what is the impact of these interventions, such as on health-related quality of life and cost efficiency? Methods: This research adopted a scoping review method. Three electronic medical databases were accessed: PubMed, EMBASE, and Cochrane Library. The research reviewed studies published between January 1989 and December 2013. In 5 stages of systematic scanning and reviewing, relevant studies were identified, selected, and charted. Then we collated, summarized, and reported the results. Results: From the initial 9380 search results, we identified 350 studies that qualified for inclusion: diabetes mellitus (n=103), cardiovascular disease (n=89), chronic respiratory disease (n=73), cancer (n=67), and stroke (n=18). Persons with one of these chronic conditions used ICT primarily for self-measurement of the body, when interacting with health care providers, with the highest rates of use seen in chronic respiratory (63%, 46/73) and cardiovascular (53%, 47/89) diseases. We found 60 relevant studies (17.1%, 60/350) on person-centered shared management ICT, primarily using telemedicine systems as personalized ICT. The highest impact measured related to the increase in empowerment (15.4%, 54/350). Health-related quality of life accounted for 8%. The highest impact connected to health professionals was an increase in clinical outcome (11.7%, 41/350). The impacts on organization outcomes were decrease in hospitalization (12.3%, 43/350) and increase of cost efficiency (10.9%, 38/350). Conclusions: This scoping review outlined ICT-enabled PCC in chronic disease management. Persons with a chronic disease could benefit from an ICT-enabled PCC approach, but ICT-PCC also yields organizational paybacks. It could lead to an increase in health care usage, as reported in some studies. Few interventions could be regarded as "fully" addressing PCC. This review
Design for health, Jan 2, 2017
Could health learn from design? For most of the target group and the contributors to the first is... more Could health learn from design? For most of the target group and the contributors to the first issue of the journal Design for Health, the answer is clear: Yes it can! Even though there is a growing interest in the qualities of design as a way of adding value to health, it is generally still neglected in the scientific disciplines. So, it is about time that a journal on design for health comes into existence. But instead of preaching to the choir, Design for Health should reach out to those who are unfamiliar with the field of design and health. An ambitious task lies ahead for Design for Health: to reach out to the whole of the target group of design and health scholars in what design could mean for health. Let's start with adopting the new concept of health, namely 'the ability to adapt and self manage in the face of social, physical, and emotional challenges.' And to strive towards open, fair and inclusive design for health.
Proceedings of Engaging Citizen Science Conference 2022 — PoS(CitSci2022), Dec 15, 2022
Monitoring and evaluating projects is important to ensure that the project proceeds smoothly and ... more 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.
Journal of Enterprising Communities: People and Places in the Global Economy
Purpose The purpose of this paper is to provide answers regarding the factors that motivate or di... more 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 fact...
MIRAJ, Moving Image Review & Art Journal, 2013
This deliverable presents the "Requirements and motivations of quadruple helix stakeholders ... more This deliverable presents the "Requirements and motivations of quadruple helix stakeholders for active engagement in the Citizen Science Hubs" of the H2020 INCENTIVE Project. The deliverable provides a current overview of the perceptions, attitudes, concerns, motivational factors and obstacles with regard to participation in Citizen Science activities in four pilot countries: Greece, Lithuania, the Netherlands, and Spain. Under INCENTIVE, four Citizen Science Hubs will be established and tested during the life-span of the project in the facilities of four Research Performing and Funding Organisations (RPFOs): University of Twente (the Netherlands), Autonomous University of Barcelona (Spain), Aristotle University of Thessaloniki (Greece) and Vilnius Gediminas Technical University (Lithuania). Essentially, the Hubs will aim to bring different stakeholders together and bridge society with science under the emerging paradigm of Citizen Science, in an institutionalised way. The...
Background: The implementation of e-health strategies has been proven to be more complex and time... more Background: The implementation of e-health strategies has been proven to be more complex and time-consuming than expected. Research points out that efficacy of the technology are not so much at stake, but its implementation (Elbert, van Os-Medendorp et al, 2014). Possible barriers named for the implementation of e-health solutions within healthcare practices are: professional resistance, organizational structures and costs. However, another obvious reason is that the technology often does not work for the health care professionals neither for the patients (Chaudhry, Phillips et al, 2007). One of the reasons mentioned is that technology overall is designed and developed for the users instead of with them. Objective: To include the users (patients and health care professionals) in the design process, we proposed in this paper to apply the People Value Canvas to support the partnership between the person with the chronic condition and the health care professional. We presented the Peop...
Kennis en krachten gebundeld citizen science in Nederland Wetenschap en samenleving in co-creatie... more Kennis en krachten gebundeld citizen science in Nederland Wetenschap en samenleving in co-creatie Eindverslag van de werkgroep Citizen Science 26 oktober 2020
In this paper we present Scottie, a research and design project in which Media Lab Waag Society e... more 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 identif...
Well-designed interactive experiences connect people, meet their needs, life-styles and life choi... more Well-designed interactive experiences connect people, meet their needs, life-styles and life choices, and can make a positive difference on their wellbeing. The overall challenge of people-centred innovation can be summarised in how to design value for people — as well as for companies and society. To be able to create value, designers need to explore, validate and reflect upon the different design choices and their intended impact. In turn, this demands methods for understanding needs and motivations of the users, exploring solutions and designing business models. There isn't one single way to organise these tasks. Nevertheless, it may be helpful to learn from frameworks that offer a basic recipe consisting of checklists and a structure for the work to be done. In this paper, we introduce a concept development tool to support value creation for both designers and stakeholders, which we call People Value Canvas (PVC), according to which users' needs and wishes can be systema...
Indoor Living Wall: educational tool for improving eco-health awareness in public school / Domini... more Indoor Living Wall: educational tool for improving eco-health awareness in public school / Dominici, Laura; Comino, Elena. Design 4 Health. Proceedings of the 6th International Conference on Design4Health(2020), pp. 118-127. ((Intervento presentato al convegno Design 4 Health. Proceedings of the 6th International Conference on Design4Health tenutosi a Amsterdam, Netherlands nel 1st-3rd July 2020. Original Indoor Living Wall: educational tool for improving eco-health awareness in public school
Journal of participatory medicine, Jul 7, 2017
Journal of Medical Internet Research, Mar 27, 2015
Background: Person-centered information and communication technology (ICT) could encourage patien... more Background: Person-centered information and communication technology (ICT) could encourage patients to take an active part in their health care and decision-making process, and make it possible for patients to interact directly with health care providers and services about their personal health concerns. Yet, little is known about which ICT interventions dedicated to person-centered care (PCC) and connected-care interactions have been studied, especially for shared care management of chronic diseases. The aim of this research is to investigate the extent, range, and nature of these research activities and identify research gaps in the evidence base of health studies regarding the "big 5" chronic diseases: diabetes mellitus, cardiovascular disease, chronic respiratory disease, cancer, and stroke. Objective: The objective of this paper was to review the literature and to scope the field with respect to 2 questions: (1) which ICT interventions have been used to support patients and health care professionals in PCC management of the big 5 chronic diseases? and (2) what is the impact of these interventions, such as on health-related quality of life and cost efficiency? Methods: This research adopted a scoping review method. Three electronic medical databases were accessed: PubMed, EMBASE, and Cochrane Library. The research reviewed studies published between January 1989 and December 2013. In 5 stages of systematic scanning and reviewing, relevant studies were identified, selected, and charted. Then we collated, summarized, and reported the results. Results: From the initial 9380 search results, we identified 350 studies that qualified for inclusion: diabetes mellitus (n=103), cardiovascular disease (n=89), chronic respiratory disease (n=73), cancer (n=67), and stroke (n=18). Persons with one of these chronic conditions used ICT primarily for self-measurement of the body, when interacting with health care providers, with the highest rates of use seen in chronic respiratory (63%, 46/73) and cardiovascular (53%, 47/89) diseases. We found 60 relevant studies (17.1%, 60/350) on person-centered shared management ICT, primarily using telemedicine systems as personalized ICT. The highest impact measured related to the increase in empowerment (15.4%, 54/350). Health-related quality of life accounted for 8%. The highest impact connected to health professionals was an increase in clinical outcome (11.7%, 41/350). The impacts on organization outcomes were decrease in hospitalization (12.3%, 43/350) and increase of cost efficiency (10.9%, 38/350). Conclusions: This scoping review outlined ICT-enabled PCC in chronic disease management. Persons with a chronic disease could benefit from an ICT-enabled PCC approach, but ICT-PCC also yields organizational paybacks. It could lead to an increase in health care usage, as reported in some studies. Few interventions could be regarded as "fully" addressing PCC. This review
Design for health, Jan 2, 2017
Could health learn from design? For most of the target group and the contributors to the first is... more Could health learn from design? For most of the target group and the contributors to the first issue of the journal Design for Health, the answer is clear: Yes it can! Even though there is a growing interest in the qualities of design as a way of adding value to health, it is generally still neglected in the scientific disciplines. So, it is about time that a journal on design for health comes into existence. But instead of preaching to the choir, Design for Health should reach out to those who are unfamiliar with the field of design and health. An ambitious task lies ahead for Design for Health: to reach out to the whole of the target group of design and health scholars in what design could mean for health. Let's start with adopting the new concept of health, namely 'the ability to adapt and self manage in the face of social, physical, and emotional challenges.' And to strive towards open, fair and inclusive design for health.
Proceedings of Engaging Citizen Science Conference 2022 — PoS(CitSci2022), Dec 15, 2022
Monitoring and evaluating projects is important to ensure that the project proceeds smoothly and ... more 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.
Journal of Enterprising Communities: People and Places in the Global Economy
Purpose The purpose of this paper is to provide answers regarding the factors that motivate or di... more 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 fact...
MIRAJ, Moving Image Review & Art Journal, 2013
This deliverable presents the "Requirements and motivations of quadruple helix stakeholders ... more This deliverable presents the "Requirements and motivations of quadruple helix stakeholders for active engagement in the Citizen Science Hubs" of the H2020 INCENTIVE Project. The deliverable provides a current overview of the perceptions, attitudes, concerns, motivational factors and obstacles with regard to participation in Citizen Science activities in four pilot countries: Greece, Lithuania, the Netherlands, and Spain. Under INCENTIVE, four Citizen Science Hubs will be established and tested during the life-span of the project in the facilities of four Research Performing and Funding Organisations (RPFOs): University of Twente (the Netherlands), Autonomous University of Barcelona (Spain), Aristotle University of Thessaloniki (Greece) and Vilnius Gediminas Technical University (Lithuania). Essentially, the Hubs will aim to bring different stakeholders together and bridge society with science under the emerging paradigm of Citizen Science, in an institutionalised way. The...
Background: The implementation of e-health strategies has been proven to be more complex and time... more Background: The implementation of e-health strategies has been proven to be more complex and time-consuming than expected. Research points out that efficacy of the technology are not so much at stake, but its implementation (Elbert, van Os-Medendorp et al, 2014). Possible barriers named for the implementation of e-health solutions within healthcare practices are: professional resistance, organizational structures and costs. However, another obvious reason is that the technology often does not work for the health care professionals neither for the patients (Chaudhry, Phillips et al, 2007). One of the reasons mentioned is that technology overall is designed and developed for the users instead of with them. Objective: To include the users (patients and health care professionals) in the design process, we proposed in this paper to apply the People Value Canvas to support the partnership between the person with the chronic condition and the health care professional. We presented the Peop...
Kennis en krachten gebundeld citizen science in Nederland Wetenschap en samenleving in co-creatie... more Kennis en krachten gebundeld citizen science in Nederland Wetenschap en samenleving in co-creatie Eindverslag van de werkgroep Citizen Science 26 oktober 2020
In this paper we present Scottie, a research and design project in which Media Lab Waag Society e... more 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 identif...
Well-designed interactive experiences connect people, meet their needs, life-styles and life choi... more Well-designed interactive experiences connect people, meet their needs, life-styles and life choices, and can make a positive difference on their wellbeing. The overall challenge of people-centred innovation can be summarised in how to design value for people — as well as for companies and society. To be able to create value, designers need to explore, validate and reflect upon the different design choices and their intended impact. In turn, this demands methods for understanding needs and motivations of the users, exploring solutions and designing business models. There isn't one single way to organise these tasks. Nevertheless, it may be helpful to learn from frameworks that offer a basic recipe consisting of checklists and a structure for the work to be done. In this paper, we introduce a concept development tool to support value creation for both designers and stakeholders, which we call People Value Canvas (PVC), according to which users' needs and wishes can be systema...
Indoor Living Wall: educational tool for improving eco-health awareness in public school / Domini... more Indoor Living Wall: educational tool for improving eco-health awareness in public school / Dominici, Laura; Comino, Elena. Design 4 Health. Proceedings of the 6th International Conference on Design4Health(2020), pp. 118-127. ((Intervento presentato al convegno Design 4 Health. Proceedings of the 6th International Conference on Design4Health tenutosi a Amsterdam, Netherlands nel 1st-3rd July 2020. Original Indoor Living Wall: educational tool for improving eco-health awareness in public school