Futures for Health Research Data Platforms From the Participants’ Perspectives
| Autor: | Raju Maharjan, Jakob E. Bardram, Giovanna Nunes Vilaza, David Coyle |
|---|---|
| Rok vydání: | 2020 |
| Předmět: |
Clinical cohort
Population Context (language use) 02 engineering and technology Health research 0202 electrical engineering electronic engineering information engineering 0501 psychology and cognitive sciences education Implementation 050107 human factors Research data Ethics education.field_of_study business.industry 05 social sciences Perspective (graphical) 020207 software engineering Public relations Acceptance Privacy Data platforms business Psychology Personal sensing Futures contract Qualitative research |
| Zdroj: | NordiCHI Proceedings of the 11th Nordic Conference on Human-Computer Interaction: Shaping Experiences, Shaping Society Nunes Vilaza, G, Maharjan, R, Coyle, D & Bardram, J E 2020, Futures for Health Research Data Platforms from the Participants' Perspectives . in Proceedings of the 11th Nordic Conference on Human-Computer Interaction: Shaping Experiences, Shaping Society . Association for Computing Machinery, 11th Nordic Conference on Human-Computer Interaction, Tallinn, Estonia, 25/10/2020 . https://doi.org/10.1145/3419249.3420110 |
| DOI: | 10.1145/3419249.3420110 |
| Popis: | In clinical cohort studies, researchers analyse the life history of population groups to understand the evolution of diseases. Health research data platforms came to facilitate such studies as they allow multiple projects to share access to cohorts' non-identifiable health information. Some latest initiatives are also starting to include mobile-generated data in their research programmes. Although seemly beneficial, it is not yet clear how potential participants feel about contributing to the new platforms: there is a need to investigate potential factors related to the acceptance in this specific context. In this paper, previous works from related contexts were brought together and, along with a qualitative study, composed a participant-centred perspective of enablers and barriers for contribution. We found that there is an apparent misalignment between current implementations and participants' preferences, leading us to propose design guidelines for future developments which can make participation more ethical and engaging. |
| Databáze: | OpenAIRE |
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