Operationalizing Personalized Medicine: Data Translation Practices in Bioinformatics Laboratories

This paper presents findings from an ethnographic study of two genomics and bioinformatics labs. The focus of this research is on the day-to-day practices of using multiple technologies to integrate data across different platforms. We argue that sociotechnical challenges (including technical, contextual, and political challenges) emerge when data integration practices are carried out, due to the embedded nature of the important, yet unrecorded and implicit historical information that each dataset carries. We observed that sociotechnical sensemaking was common place in lab work, and was the only method for working out the complexity of the challenges which arose during data integration activities. We suggest that due attention be given to this matter, as challenges related to assessing data are likely to arise once more when such data travels back to the bedside, where it is poised to directly impact human health

Implementation and adoption of nationwide electronic health records in secondary care in England: final qualitative results from prospective national evaluation in "early adopter" hospitals

Objectives: To evaluate the implementation and adoption of the NHS detailed care records service in "early adopter" hospitals in England. Design: Theoretically informed, longitudinal qualitative evaluation based on case studies. Setting: 12 "early adopter" NHS acute hospitals and specialist care settings studied over two and a half years. Data sources: Data were collected through in depth interviews, observations, and relevant documents relating directly to case study sites and to wider national developments that were perceived to impact on the implementation strategy. Data were thematically analysed, initially within and then across cases. The dataset consisted of 431 semistructured interviews with key stakeholders, including hospital staff, developers, and governmental stakeholders; 590 hours of observations of strategic meetings and use of the software in context; 334 sets of notes from observations, researchers' field notes, and notes from national conferences; 809 NHS documents; and 58 regional and national documents. Results: Implementation has proceeded more slowly, with a narrower scope and substantially less clinical functionality than was originally planned. The national strategy had considerable local consequences (summarised under five key themes), and wider national developments impacted heavily on implementation and adoption. More specifically, delays related to unrealistic expectations about the capabilities of systems; the time needed to build, configure, and customise the software; the work needed to ensure that systems were supporting provision of care; and the needs of end users for training and support. Other factors hampering progress included the changing milieu of NHS policy and priorities; repeatedly renegotiated national contracts; different stages of development of diverse NHS care records service systems; and a complex communication process between different stakeholders, along with contractual arrangements that largely excluded NHS providers. There was early evidence that deploying systems resulted in important learning within and between organisations and the development of relevant competencies within NHS hospitals. Conclusions: Implementation of the NHS Care Records Service in "early adopter" sites proved time consuming and challenging, with as yet limited discernible benefits for clinicians and no clear advantages for patients. Although our results might not be directly transferable to later adopting sites because the functionalities we evaluated were new and untried in the English context, they shed light on the processes involved in implementing major new systems. The move to increased local decision making that we advocated based on our interim analysis has been pursued and welcomed by the NHS, but it is important that policymakers do not lose sight of the overall goal of an integrated interoperable solution