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Curating Complex, Dynamic and Distributed Data: Telehealth as a Laboratory for Strategy

Ure, Jenny; Ure, Jenny; Ure, Jenny P; Hanley, Janet; Irshad, Tasneem; Whyte, Angus; Pagliari, Claudia; Pinnock, Hilary; McKinstry, Brian

Authors

Jenny Ure

Jenny Ure

Jenny P Ure

Tasneem Irshad

Angus Whyte

Claudia Pagliari

Hilary Pinnock

Brian McKinstry



Abstract

Telehealth monitoring data is now being collected across large populations of patients with chronic diseases such as stroke, hypertension, COPD and dementia. These large, complex and heterogeneous datasets, including distributed sensor and mobile datasets, present real opportunities for knowledge discovery and re-use, however they also generate new challenges for curation. This paper uses qualitative research with stakeholders in two nationally-funded telehealth projects to outline the perceptions, practices and preferences of different stakeholders with regard to data curation. Telehealth provides a living laboratory for the very different challenges implicit in designing and managing data infrastructure for embedded and ubiquitous computing. Here, technical and human agents are distributed, and interaction and state change is a central component of design, rather than an inconvenient challenge to it. The authors argue that there are lessons to be learned from other domains where data infrastructure has been radically rethought to address these challenges

Journal Article Type Article
Online Publication Date Aug 19, 2011
Publication Date 2011
Deposit Date Jun 21, 2013
Publicly Available Date Jun 21, 2013
Electronic ISSN 1746-8256
Publisher Digital Curation Centre
Peer Reviewed Peer Reviewed
Volume 6
Issue 2
Pages 128-145
DOI https://doi.org/10.2218/ijdc.v6i2.207
Keywords Telehealth; datasets; distributed sensor; mobile datasets; knowledgediscovery; data curation;
Public URL http://researchrepository.napier.ac.uk/id/eprint/6136
Publisher URL http://dx.doi.org/doi:10.2218/ijdc.v6i2.207
Contract Date Jun 21, 2013

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Copyright Statement
Copyright for papers and articles published in this journal is retained by the authors, with first publication rights granted to the University of Edinburgh. It is a condition of publication that authors license their paper or article under a Creative Commons Attribution Licence.




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