Report of the project 'FAIR: geen woorden maar data' about the FAIRification of research data (in Dutch). It describes the proof of concept for implementation of the FAIR principles. The implementation is based on the resource description framework (RDF) and semantic knowledge representations using ontologies.
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An example for the development of a potential Minimum Data Set (MDS) within the Urban Vitality (UV) themes ‘Gezond ouder worden / Mensen in Beweging’. The goal is to ensure more uniform collection of outcome measures, based on FAIR principles (ref 1), and to facilitate reuse of data and analyses spanning multiple studies. This prototype MDS is based on The Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS) (ref 2), the project FAIR: geen woorden maar data (ref 3) in which we examined 14 UV-studies about ageing and frailty of elderly, and the set of common data elements for rare disease registration (ref 4).
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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.
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