University of Sussex

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Invisible data: secondary users working with concealed information in electronic patient records

posted on 2023-06-08, 12:14 authored by Lesley Axelrod, Flis Henwood
The Patient Records Enhancement Project (PREP) is a multidisciplinary project that involves field studies of the human-computer interaction that takes place in doctor’s surgeries alongside work strands on epidemiology, statistics, natural language processing, and visualisation. Electronic patient records (EPRs) provide a rich data source with the potential to answer key questions in biomedical, clinical and public health. Some of the data in records consists of codes that are selected from a hierarchical list. Codes can be supplemented by ‘free text’ that the health professional or their staff type in. The information contained in these health records can be difficult to manage, or concealed in the less accessible "free text" notes. Epidemiologists, who use statistical methods with databases of such records often use only the coded data, for which is easy to guarantee anonymity, making it cheaper to obtain and easier to mange. Recent work suggests estimations are significantly altered by inclusion of information from the free text portions of records. We are conducting field studies in doctor’s surgeries and using qualitative methods to explore how and why health data is created in the way it is. We explore the ‘hidden’ nature of the free text data and the implicit communication of sensitive information that is sometimes communicated by what is NOT typed or coded into the record. Relationships between owners and primary and secondary users of electronic health data is complex due to issues around privacy and confidentiality. Domain knowledge is required to appreciate this unseen data. Meanwhile the relationship between data, owners, both primary and secondary users and researchers is complicated by the requirements of confidentiality and privacy. We explore challenges of incorporating electronic information streams with other communication and the benefits of multidisciplinary work where qualitative methods have potential to support quantitative work.


Publication status

  • Published

Presentation Type

  • paper

Event name

Third Annual Conference - Explorations in Ethnography, Language and Communication: Perspectives on Data

Event location

Birmingham, UK

Event type


Event date

23-24th September

Department affiliated with

  • Primary Care and Public Health Publications

Full text available

  • No

Peer reviewed?

  • Yes

Legacy Posted Date


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