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.
Highlights
Telehealth monitoring data is being collected across large populations of patients with chronic diseases such as stroke, hypertension, chronic obstructive pulmonary disease (COPD) and dementia
Mobile phones and telemetrically-supported devices in the home facilitate remote monitoring of chronic conditions such as hypertension and chronic obstructive pulmonary disease (COPD)
The telehealth projects that were the focus of the research were pilot studies evaluating the use of home-based telemetry to measure symptoms and vital parameters such as blood pressure (BP), blood glucose and pulse-oximetry using linked monitoring devices (McKinstry et al, 2009)
Summary
A qualitative approach (Denzin & Lincoln, 2000; Strauss & Corbin, 1990) was adopted with transcription and independent coding of interviews and focus groups by two researchers, from which a set of evolving themes and sub themes was developed. Recent research with young people on the use of electronic health records (EHR) highlights a wish to have the kind of flexible control of data use that they are familiar with in other contexts such as social networking sites, and a greater awareness of the risks associated with data sharing (Paterson & Grant, 2010) Companies such as MyDex increasingly highlight the potential of user-based information management services in cutting the cost and risk of ensuring the currency and quality of data, better leveraging the value of that data for users and other stakeholders, and enhancing data governance and data use/re-use. There is clearly an inter-organisational element to mapping the provenance and transformation of data Data curation in this context would require agreements with healthcare companies participating in health research to maintain records of algorithms used, even if these were not available for inspection at the time of use, as in the case study. What are researchers and clinical trial managers views on how this might be achieved? What, if anything, is currently done to annotate or store this kind of data in these fairly typical projects?
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