Between data and touch: how nurses and patients negotiate the human boundary under data-driven surveillance in chronic care

The integration of data-driven continuous monitoring into chronic disease management is often presented as a solution for clinical efficiency. However, this technological shift may substantially reshape care relations, power, and intimacy. Prevailing research, focused on technical validation, fails to capture how such systems operate as social forces. A critical, theory-informed examination of these lived transformations is needed. This study goes beyond documenting ethical dilemmas by critically investigating how data-driven surveillance restructures nurse-patient dynamics. We aim to uncover the mechanisms through which data-driven surveillance disciplines both caregivers and recipients, and to identify where and how the irreducible elements of humanistic care persist and resist. A critical qualitative design was employed, guided by Foucault’s concept of governmentality as a sensitising lens. Semi-structured interviews were conducted with 12 registered nurses and 15 patients with hypertension or type 2 diabetes in one Chinese tertiary hospital that had, for six months, implemented real-time automated physiological monitoring. Data were analysed using reflexive thematic analysis with a hybrid (deductive-inductive) approach. Our analysis reveals three core mechanisms: (1) systematic arbitration (nurses as constant negotiators between automated alerts and situated clinical judgment); (2) datafied self-surveillance, patients internalise the data-driven gaze, policing their own behaviour; (3) a shared convergence around the human boundary, both nurses and patients actively defend empathy, contextual interpretation, and emotional recognition as domains irreducible to data. This boundary is not a passive remnant but an active, shared accomplishment. Digital surveillance in chronic care does not act as a neutral adjunct. Instead, it operates as a disciplinary technology that asymmetrically disciplines nurses and patients. However, the identified human boundary represents a critical site of resistance and re-humanisation. The future of humane digital health depends on deliberately designing socio-technical systems that strengthen, rather than erode, the relational and interpretive core of clinical practice. What is already known: Research on digital monitoring in chronic care largely focuses on technical validation or abstract ethical principles, with limited critical examination of how data-driven systems reshape care relationships. The importance of human oversight is acknowledged, but few studies empirically investigate how power and intimacy are reconfigured through institutional surveillance. Existing qualitative work often examines nurses or patients separately, lacking a comparative, relational analysis. What this paper adds: A novel empirical application of Foucault’s governmentality lens to rule‑based digital surveillance, reconceptualising it as a disciplinary force that co‑produces asymmetric power dynamics. Identification of three concrete mechanisms, systematic arbitration, datafied self‑surveillance, and a shared convergence around the human boundary — that reshape clinical practice. Demonstration that both nurses and patients actively defend empathy, context, and emotional meaning as irreducible domains, offering a grounded model for “re‑humanisation by design.” A prescriptive shift from ethics checklists to design politics, arguing that future digital health must amplify rather than erode the humanistic core of care.

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Publication Details

Journal
BMC Medical Ethics
Published
2026-07-24
DOI
https://doi.org/10.1186/s12910-026-01562-9
Primary Topic
Electronic Health Records Systems
Type
article
Field-Weighted Citation Impact
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article

Between data and touch: how nurses and patients negotiate the human boundary under data-driven surveillance in chronic care

Zhu Qd, Le Chen, Weizhen Hu
BMC Medical Ethics
Electronic Health Records Systems
article

Between data and touch: how nurses and patients negotiate the human boundary under data-driven surveillance in chronic care

Zhu Qd, Le Chen, Weizhen Hu
article en

Abstract

The integration of data-driven continuous monitoring into chronic disease management is often presented as a solution for clinical efficiency. However, this technological shift may substantially reshape care relations, power, and intimacy. Prevailing research, focused on technical validation, fails to capture how such systems operate as social forces. A critical, theory-informed examination of these lived transformations is needed. This study goes beyond documenting ethical dilemmas by critically investigating how data-driven surveillance restructures nurse-patient dynamics. We aim to uncover the mechanisms through which data-driven surveillance disciplines both caregivers and recipients, and to identify where and how the irreducible elements of humanistic care persist and resist. A critical qualitative design was employed, guided by Foucault’s concept of governmentality as a sensitising lens. Semi-structured interviews were conducted with 12 registered nurses and 15 patients with hypertension or type 2 diabetes in one Chinese tertiary hospital that had, for six months, implemented real-time automated physiological monitoring. Data were analysed using reflexive thematic analysis with a hybrid (deductive-inductive) approach. Our analysis reveals three core mechanisms: (1) systematic arbitration (nurses as constant negotiators between automated alerts and situated clinical judgment); (2) datafied self-surveillance, patients internalise the data-driven gaze, policing their own behaviour; (3) a shared convergence around the human boundary, both nurses and patients actively defend empathy, contextual interpretation, and emotional recognition as domains irreducible to data. This boundary is not a passive remnant but an active, shared accomplishment. Digital surveillance in chronic care does not act as a neutral adjunct. Instead, it operates as a disciplinary technology that asymmetrically disciplines nurses and patients. However, the identified human boundary represents a critical site of resistance and re-humanisation. The future of humane digital health depends on deliberately designing socio-technical systems that strengthen, rather than erode, the relational and interpretive core of clinical practice. What is already known: Research on digital monitoring in chronic care largely focuses on technical validation or abstract ethical principles, with limited critical examination of how data-driven systems reshape care relationships. The importance of human oversight is acknowledged, but few studies empirically investigate how power and intimacy are reconfigured through institutional surveillance. Existing qualitative work often examines nurses or patients separately, lacking a comparative, relational analysis. What this paper adds: A novel empirical application of Foucault’s governmentality lens to rule‑based digital surveillance, reconceptualising it as a disciplinary force that co‑produces asymmetric power dynamics. Identification of three concrete mechanisms, systematic arbitration, datafied self‑surveillance, and a shared convergence around the human boundary — that reshape clinical practice. Demonstration that both nurses and patients actively defend empathy, context, and emotional meaning as irreducible domains, offering a grounded model for “re‑humanisation by design.” A prescriptive shift from ethics checklists to design politics, arguing that future digital health must amplify rather than erode the humanistic core of care.

BMC Medical Ethics
Wenzhou Medical University (CN), Affiliated Eye Hospital of Wenzhou Medical College (CN)
Peace, Justice and strong institutions
Openalex Percentile: Top 3%
Electronic Health Records Systems
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