The Development of Data Infrastructures for eHealth: A Socio-Technical Perspective

Abstract

We explore some recurring socio-technical problems encountered in the development of infrastructure for sharing and re-using data across sites and social scales for eHealth research. We link these problems to contradictions between underlying assumptions about data as a commodity whose reuse is not compromised when it is extracted from the context in which it has been captured, and the reality of data as entangled with, and constituted through, local practice. To illustrate these problems, we draw on the experiences of a number of HealthGrid projects developing infrastructures for data sharing and reuse, and trace the strategies that have evolved to address them. These experiences problematize the "one size fits all" model initially adopted by HealthGrids, and highlight the need for design and development strategies that are able to engage with local needs and thereby ensure that the technical infrastructure is properly aligned with the human infrastructure it is supposed to support.

The interplay between global standards and local practice in nursing

“…These scholars highlight the trade-off between pre-defined categories and the cases that do not fit into formal classification systems. Similar studies have emphasized both the enabling and constraining characteristics of classifications [45], as well as the tension between interoperability and local usability [46]. On the one hand, formal terminologies enable shared meaning and comparability across different contexts.…”

“…On the other hand, their use restricts activity that does not conform to the types recognized in the category systems [45]. An emerging approach for managing the tension between formal terminologies and local diversity is the use of folksonomies, i.e., user generated metadata or tags [46,47]. The origin of this "grassroots" categorization comes from social web communities, where users started to tag content on websites.…”

Human Genome Project, Personalised Medicine and Future Health Care

“…Indeed, data infrastructure initiatives have flourished over the last decade, encompassing a wide spectrum of genomic data-based services, from general repositories to support for the analysis of individual cases (Bin Han Ong, 2015;Merelli et al, 2014;Staes et al, 2009;Wang & Krishnan, 2014). At the same time, the demise of GDB in 2008 highlights how databases and related infrastructures have unclear F o r R e v i e w O n l y sustainability and longevity, as their operational costs are not shared across the community in a proportioned way and their adoption is not unanimous (Ribes & Bowker, 2009;Ure et al, 2009;Bastow & Leonelli, 2010).…”

An exploration of factors affecting participation in U.S. health information exchange networks : a dual network participation theory based case study.

“…No studies of U.S. HIENs were found in this field. However, the search did find studies of HIENlike collaboratives in other countries (Mantzana et al 2007;Sahay et al 2009;Ure et al 2009), studies of electronic medical record adoption Davidson et al 2005;Reardon et al 2007), and some related topics (e.g., Ravichandran et al 2005 processes (Kuhn et al 2007;Starr 1997). HIEN related papers in these two areas focus on topics such as HIEN assessment (Johnson et al 2007;Labkoff et al 2007), governance and policy (Marchibroda 2007), costs and outcomes (Middleton 2006), privacy/security (McGraw et al 2009;Simon et al 2009), technical design (Ramsaroop et al 2000;Shabo 2006), adoption (Vest et al 201Ob), and strategy (Overhage 2007;Vest et al 201Oa;Yasnoff et al 2004).…”

“…A review in leading academic journals in the fields of information systems, organizational sciences, health informatics and health policy identified no theory driven academic research on U.S. HIENs, and just a few studies of HIENs in other countries (Ammenwerth et al 2004;Kuhn et al 2007;Mantzana et al 2007; Sahay et al 2009;Sprivulis et al 2007; Ure et al 2009). …”