The COVID-19 pandemic has changed many aspects of people’s lives, and seems to have affected people’s wellbeing and relation to technology now, and in the future. Not only has it changed people’s lives and the way citizens live, work, exercise, craft and stay connected, the pandemic has also altered the way Human Computer Interaction (HCI) professionals can engage in face-to-face interactions and consequently participatory, human-centered design and research. Limitations in being close to others and having physical, visible and shared interactions pose a challenge as these aspects are typically considered critical for the accomplishment of a transparent, attractive and critical understanding of technology and respective civic and digital engagement for wellbeing. Consequently, the risk now observed is that citizens in the new ‘normal’ digital society, particularly vulnerable groups, are beingeven less connected, supported or heard. Drawing from a study with an expert panel of 20 selected HCI related professionals in The Netherlands that participated on-line (through focus groups, questionnaires and/or interviews) discussing co-creation for wellbeing in times of COVID-19 (N=20), and civic values for conditional data sharing (N=11), this paper presents issues encountered and potential new approaches to overcome participatory challenges in the ‘new’ digital society. This study further draws on project reporting and a ‘one week in the life of’ study in times of COVID-19 with a physical toolkit for remote data collection that was used with older adults (65+, N=13) and evaluated with professionals (N=6). Drawing on such projects and professional experiences, the paper discusses some opportunities of participatory approaches for the new ‘distant’ normal.
Constante vernieuwingen op het gebied van digitale technologie in zowel prive- als publieke omgevingen kenmerken de huidige samenlevingen en benadrukken de alsmaar belangrijker wordende rol daarin voor socio-technische systemen. De uitdaging is om voorafgaand, tijdens en na de ontwikkeling van deze systemen de mens en zijn digitale, sociale en fysieke omgeving centraal te blijven stellen. Dit vraagt om een duidelijk inzicht in de behoeften, wensen en eisen van mensen, zodat deze vertaald kunnen worden naar digitale technologie die een positieve bijdrage levert aan gezondheid, welzijn en participatie. Toegepast onderzoek naar het ontwerp- en appropriatieproces van digitale technologie voor maatschappelijk welbevinden is nodig om succesvol gebruik, implementatie, evaluatie en opschaling te bevorderen. Een goede samenwerking en beter begrip van elkaars doelen, motieven en werkwijzen, tussen zowel ontwerpers en gebruikers als tussen onderzoek, onderwijs en het werkveld, zijn hiervoor absolute vereisten. Lector Digital Life dr. Somaya Ben Allouch pleit in haar rede voor meer aandacht voor een mensgerichte ontwerpaanpak van digitale technologie. Het onderzoek van het lectoraat richt zich op innovatieve, digitale technologie op het gebied van mens-systeem interactie, sensoren en hun data en creatieve methodes voor gezondheid, welzijn en participatie. In de rede zal nader worden ingegaan op hoe het onderzoek van het lectoraat Digital Life bijdraagt aan het (inter)nationale netwerk van onderzoek, onderwijs en praktijk op het snijvlak van technologie, gezondheid en welzijn.
Aim: There is often a gap between the ideal of involving older persons iteratively throughout the design process of digital technology, and actual practice. Until now, the lens of ageism has not been applied to address this gap. The goals of this study were: to voice the perspectives and experiences of older persons who participated in co-designing regarding the design process; their perceived role in co-designing and intergenerational interaction with the designers; and apparent manifestations of ageism that potentially influence the design of digital technology. Methods: Twenty-one older persons participated in three focus groups. Five themes were identified using thematic analysis which combined a critical ageism ‘lens’ deductive approach and an inductive approach. Results: Ageism was experienced by participants in their daily lives and interactions with the designers during the design process. Negative images of ageing were pointed out as a potential influencing factor on design decisions. Nevertheless, positive experiences of inclusive design pointed out the importance of “partnership” in the design process. Participants defined the “ultimate partnership” in co-designing as processes in which they were involved from the beginning, iteratively, in a participatory approach. Such processes were perceived as leading to successful design outcomes, which they would like to use, and reduced intergenerational tension. Conclusions: This study highlights the potential role of ageism as a detrimental factor in how digital technologies are designed. Viewing older persons as partners in co-designing and aspiring to more inclusive design processes may promote designing technologies that are needed, wanted and used.
In veel Afrikaanse landen zien we een inperking van de maatschappelijke ruimte (‘civic space’). Deze ruimte is cruciaal om in democratische staten transparantie, vrijheid van meningsuiting en verantwoording van bestuur te realiseren. In een steeds sterke digitaliserende maatschappij wordt toegang tot digitale middelen een mensenrecht. Daar waar regeringen proberen hun burgers en organisaties dat recht tot digitale informatievoorziening en –uitwisselingen te ontnemen komen de Sustainable Development Goals in het gedrang. Doel African Digital Rights Network (ADRN) wil inzicht verkrijgen in de stakeholders ne technologieën die betrokken zijn net het openen of onderdrukken van de online maatschappelijke ruimte (‘civic space’). Het netwerk beoogt bij te dragen aam empowerment van burgers om hun digitale mensenrechten uit te oefenen. Resultaten ADRN heeft een vergelijkende studie van 10 Afrikaanse landen uitgevoerd naar het gebruik van digitale technologieën voor het openen of onderdrukken van de online maatschappelijke ruimte (‘civic space’). Het project heeft onder andere geleidt tot de volgende publicatie: Mapping the Supply of Surveillance Technologies to Africa: Case Studies from Nigeria, Ghana, Morocco, Malawi, and Zambia Looptijd 01 mei 2020 - 20 april 2021 Aanpak ADRN organiseert een netwerk van onderzoekers, analisten, digitale rechtenorganisaties en activisten om de dynamiek van het openen en onderdrukken van de digitale maatschappelijke ruimte in kaart te brengen. Het netwerk bouwt op een interdisciplinaire onderzoeksaanpak o.l.v. het Institute for Development Studies, een vooraanstaand onderzoeksinstituut. Relevantie van het project Het onderzoek leidt tot aanbevelingen voor o.a. beleidsmakers en maatschappelijke organisaties ter bevordering van de digitale maatschappelijke ruimte. Daarnaast worden digitale tools en trainingsmateriaal gefaciliteerd voor het monitoren van ontwikkelingen en dreigingen van de digitale maatschappelijke ruimte. CofinancieringDit onderzoek wordt gefinancierd door UKRI - GCRF Digital Innovation for Development in Africa (DIDA)Meer weten? UKRI GCRF: African Digital Rights Network Website ADRN
The project aims to improve palliative care in China through the competence development of Chinese teachers, professionals, and students focusing on the horizontal priority of digital transformation.Palliative care (PC) has been recognised as a public health priority, and during recent years, has seen advances in several aspects. However, severe inequities in the access and availability of PC worldwide remain. Annually, approximately 56.8 million people need palliative care, where 25.7% of the care focuses on the last year of person’s life (Connor, 2020).China has set aims for reaching the health care standards of the developed countries by 2030 through the Healthy China Strategy 2030, where one of the improvement areas in health care includes palliative care, thus continuing the previous efforts.The project provides a constructive, holistic, and innovative set of actions aimed at resulting in lasting outcomes and continued development of palliative care education and services. Raising the awareness of all stakeholders on palliative care, including the public, is highly relevant and needed. Evidence based practice guidelines and education are urgently required for both general and specialised palliative care levels, to increase the competencies for health educators, professionals, and students. This is to improve the availability and quality of person-centered palliative care in China. Considering the aging population, increase in various chronic illnesses, the challenging care environment, and the moderate health care resources, competence development and the utilisation of digitalisation in palliative care are paramount in supporting the transition of experts into the palliative care practice environment.General objective of the project is to enhance the competences in palliative care in China through education and training to improve the quality of life for citizens. Project develops the competences of current and future health care professionals in China to transform the palliative care theory and practice to impact the target groups and the society in the long-term. As recognised by the European Association for Palliative Care (EAPC), palliative care competences need to be developed in collaboration. This includes shared willingness to learn from each other to improve the sought outcomes in palliative care (EAPC 2019). Since all individuals have a right to health care, project develops person-centered and culturally sensitive practices taking into consideration ethics and social norms. As concepts around palliative care can focus on physical, psychological, social, or spiritual related illnesses (WHO 2020), project develops innovative pedagogy focusing on evidence-based practice, communication, and competence development utilising digital methods and tools. Concepts of reflection, values and views are in the forefront to improve palliative care for the future. Important aspects in project development include health promotion, digital competences and digital health literacy skills of professionals, patients, and their caregivers. Project objective is tied to the principles of the European Commission’s (EU) Digital Decade that stresses the importance of placing people and their rights in the forefront of the digital transformation, while enhancing solidarity, inclusion, freedom of choice and participation. In addition, concepts of safety, security, empowerment, and the promotion of sustainable actions are valued. (European Commission: Digital targets for 2030).Through the existing collaboration, strategic focus areas of the partners, and the principles of the call, the PalcNet project consortium was formed by the following partners: JAMK University of Applied Sciences (JAMK ), Ramon Llull University (URL), Hanze University of Applied Sciences (HUAS), Beijing Union Medical College Hospital (PUMCH), Guangzhou Health Science College (GHSC), Beihua University (BHU), and Harbin Medical University (HMU). As project develops new knowledge, innovations and practice through capacity building, finalisation of the consortium considered partners development strategy regarding health care, (especially palliative care), ability to create long-term impact, including the focus on enhancing higher education according to the horizontal priority. In addition, partners’ expertise and geographical location was also considered important to facilitate long-term impact of the results.Primary target groups of the project include partner country’s (China) staff members, teachers, researchers, health care professionals and bachelor level students engaging in project implementation. Secondary target groups include those groups who will use the outputs and results and continue in further development in palliative care upon the lifetime of the project.
This project aims to develop a measurement tool to assess the inclusivity of experiences for people with varying challenges and capabilities on the auditory spectrum. In doing so, we performed an in-depth exploration of scientific literature and findings from previous projects by Joint Projects. Based on this, we developed an initial conceptual model that focuses on sensory perception, emotion, cognition, and e[ort in relation to hearing and fatigue. Within, this model a visitor attraction is seen as an “experienscape” with four key elements: content, medium, context, and individual. In co-creative interviews with experts by experience with varying challenges on the auditory spectrum, they provided valuable insights that led to a significant expansion of this initial model. This was a relevant step, as in the scientific and professional literature, little is known about the leisure experiences of people with troubled hearing. For example, personal factors such as a person’s attitude toward their own hearing loss and the social dynamics within their group turned out to greatly influence the experience. The revised model was then applied in a case study at Apenheul, focusing on studying differences in experience of their gorilla presentation amongst people with varying challenges on the auditory spectrum.Societal issueThe Netherlands is one of the countries in Europe with the highest density of visitor attractions. Despite this abundance, many visitor attractions are not fully accessible to everyone, particularly to visitors with disabilities who sometimes are not eligible to ride due to safety concerns, yet when eligible generally still encounter numerous barriers. Accessibility of visitor attractions can be approached in various ways. However, because the focus often lies on operational and technical aspects (e.g., reducing stimuli at certain times of the day by turning o[ music, o[ering alternative wheelchair entrances), strategic and community-focused approaches are often overlooked. More importantly, there is also a lack of attention to the experience of visitors with disabilities. This becomes apparent from several studies from Joint Projects, where visitor attractions are being visited together with experts by experience with various disabilities. Nevertheless, experience is often being regarded as the 'core product' of the leisure sector. The right to meet, discover, develop, relax and thus enjoy this core product is hindered for many people with disabilities due to a lack of knowledge, inaccessibility (physical, digital, social, communicative as well as financial) and discrimination in society. Additionally, recreation entrepreneurs still face a significant gap in reaching the potential market of guests with disabilities and their networks. Thus, despite the numerous initiatives in the leisure sector aimed at improving accessibility on technical and operational fronts, often people with disabilities are still not being able to experience the same kind of enjoyment as those without. These observations form the pressing impetus for initiating the current research project, tapping into the numerous opportunities for learning, development and growth on making leisure offer more inclusive.Benefit to societyIn total, the current project approach comes with a number of enrichments in terms of both knowledge and methodology: a mixed-methods approach that allows for comparing data from different sources to obtain a more complete picture of the experience; a methodological co-design process that honours the 'nothing about us without us' principle; and benchmarking for a group (i.e., people with challenges on the auditory spectrum) that despite the size of its population has thus far mostly been overlooked.
