Abstract
COVID-19 has brought vulnerability close. Notifications as pharmakon. Quotidian data consumption allaying existential dread, or at times magnifying it. Digital, media and scientific literacies fast tracked to comprehend global catastrophe and counter misinformation. But data does not reduce vulnerability. Some are more vulnerable than others, or are made more vulnerable. No working from home for those invisible armies of essential workers now made visible. Gaps in collective barricades. Tears in social cohesion revealing a racialised pandemic and our collective good contingent on robust health services and international supply chains. High quality surveillance data becoming essential even while missing race and ethnicity information making health disparities difficult to estimate (Labgold et al., 2020). The limits of technosolutionism (the idea that digitisation and data can solve society’s ills) became apparent for many in “vulnerable circumstances'' during the pandemic (De Souza and Ahmed, 2021). While for others technocratic solutions lead to more surveillance and disciplining (Andrejevic et al., 2021).
This paper evokes much of my own ambivalence and engagement with digitalisation and datafication in health. On the one hand it reveals incompleteness in data practices in electronic health record (EHR) systems and on the other hand it poses further questions about the organisation of health and the place of surveillance. Collecting data in EHRs in a systematic and comprehensive way can not only support clinical decisions and improve patient care, but also help with the identification and elimination of health inequities (Block et al., 2020; Poulos et al., 2021). For migrants in vulnerable circumstances, medical information can be dispersed across providers and countries. These information gaps can compound health inequities for a group, navigating complex social and health problems through treacherous journeys and the retraumatising limbo of bureaucratic asylum processes. This paper is important because it shows that data were often absent or inconsistently present. Only 40% (34/86) of the case notes documented a reason for migration, 85% (74/86) of the case notes did not document a history of torture, while only 30% (26/86) of case notes recorded the length of time the asylum seeker had been in the UK. Yet, of the people using the nurse-led service 86% had migrated due to persecution or trafficking, 59% had a chronic physical illness, 51% had a mental health condition and 49% had had difficulties accessing a mainstream GP. What is not documented does not get seen or acted upon. So physical and mental health needs went unmet in mainstream services, and there was a high level of unknown need for example for support/care after torture. That a specialist service has missing data about sensitive issues means that mainstream services are even more likely to have missing or incomplete data.
These omissions have technical and relational causes. EHRs allow health services to collect, review, modify and analyse health data through digital means. Their affordances include documentation, asynchronous communication and collaboration (Beckmann et al., 2021). Safety and quality of healthcare are enhanced by increasing efficiencies, reducing errors, providing real time data, enhancing information access and by virtue of standardisation improve the quality of documentation (as long as data is high quality, accurate and complete) (Beckmann et al., 2021). However, concerns about privacy and safety are prevalent and health professionals complain about not being trained to use EHRs and having inadequate technical support. In our contemporary ‘technology rich’ health environments, nurses play a major role in data collection and quality, for which they need technological and informatics skills, sometimes delegated from academic settings to workplaces (Raghunathan et al., 2021). Efficiencies that bolster neoliberal healthcare engines, can mean unfair system burdens are displaced to individual bodies juggling care and administration (Dillard-Wright, 2019). Collaboration and communication can be sacrificed in the process (Beckmann et al., 2021).
So how can data quality and completeness be enhanced? Asking sensitive questions about people’s experiences of torture and the asylum journey may be fundamental but retraumatising. Further training might be needed for nurses to ensure questions are therapeutic and meaningful rather than invasive and stressful (Block et al., 2020). Once the questions are asked and then answered, therapeutic support or appropriate services must in turn be made available quickly. The paper shows data can help identify needs and provide evidence for further personnel and resources. However, datafication and industrialisation in health can reduce nurse autonomy, enabling and constraining professional possibilities. Audit trails can become ways to surveil nurses’ behaviours, of regulating from a distance (Dillard-Wright, 2019). Perhaps my ambivalence about the constraints, surveillance and power relations embedded in datafication in health can be ameliorated in two ways. The first is enabling nurses to partner with service users and their communities to identify their own data priorities, and secondly, that this paper contributes to a critical discussion about the tensions wrought by datafication, so that our profession can better integrate administration and care.