Patients Say Convenience Is Not Enough: Trust and Ethics Define Digital Health

When Türkiye rolled out one of the world’s most comprehensive national digital health infrastructures, millions of people gained instant access to their laboratory results, prescriptions, imaging records, and appointment systems through platforms such as e-Nabız, e-Reçete, and the Central Physician Appointment System (MHRS). On paper, this is patient empowerment: time- and location-independent access to health information, stronger self-management, and closer interaction with healthcare professionals. But a new qualitative study published in Nursing Open suggests that technical convenience is only half the story. When researchers sat down with patients who use these systems every day, they found that the real currency of digital healthcare is not speed — it is trust, and that trust is being quietly eroded by ethical fault lines running through privacy, autonomy, transparency, and control.

The study, led by Aysun Bayram and Betül Bal with Alvisa Palese, used an interpretive phenomenological design to capture how patients actually experience digital health systems, not merely how often they use them. The researchers conducted face-to-face, semi-structured interviews averaging 40 to 45 minutes with 13 outpatients at a university hospital in Türkiye’s Eastern Black Sea Region. Participants were highly experienced users: all had used e-Nabız and MHRS, their average experience with digital health systems was just over eight years, and their uses ranged from booking appointments and viewing test results to monitoring daily activity and sleep. Interviews were recorded, transcribed verbatim, and analysed using Braun and Clarke’s six-stage reflexive thematic analysis, with the researchers reporting according to the COREQ checklist and following Lincoln and Guba’s trustworthiness framework, including member checking with two participants.

The analysis produced four main themes that read like a narrative arc of the modern digital patient: balancing convenience and dependency, losing control in the digital health environment, ethical violations becoming deeply personal, and building an ethically trustworthy system. The first theme captures an apparent paradox. Participants praised the systems for their practicality — one could book appointments without travelling to a hospital, review results before a consultation, and track prescriptions. Seeing test results in advance reduced anxiety, participants said. Yet ease of interaction did not translate into independence. Technical failures, delayed or incomplete data, dense medical terminology that left patients frightened by unfamiliar terms, and personal digital inadequacies all created friction. Many participants ended up supporting friends and family through the systems, while others depended on their social networks to use them at all — a dependency that carries its own ethical risk, since sharing health information with informal helpers can open the door to privacy violations.

The most technically revealing theme is the second: losing control. The researchers found that ethical breaches in digital health do not strike patients as isolated incidents. Instead, they accumulate as layered, mutually reinforcing erosions. Privacy erodes first, through uncertainty about where data are stored, for how long, and which algorithms or third-party artificial intelligence services process them. Autonomy follows: participants described having no say over who sees their information, no ability to delete or restrict access, and consent processes that were never meaningfully experienced. One participant summarised the asymmetry starkly: the data belong to the patient, but control of the system does not. Then trust erodes, as patients questioned whether healthcare workers, software providers, or public institutions might access records without justification. One participant reported noticing that a healthcare worker unconnected to their care had viewed past reports; another observed their family doctor accessing the e-Nabız system multiple times. Finally, procedural values — transparency, accountability, and data control — erode, because access logs are invisible, complaint mechanisms weak, and data-use conditions opaque. The result, the authors argue, is a cumulative ethical crisis rather than a series of discrete technical failures.

Crucially, the study shows that these violations are not merely cognitive judgments; they carry a distinct emotional signature. The third theme documents distress — anger, anxiety, shame, embarrassment, loss of trust, and even trauma — and a profound sense of powerlessness. Participants imagined that unauthorised disclosure of sensitive health information would leave them feeling exposed, describing it as a violation of personal space. One participant witnessed another patient’s information being mistakenly shown to a patient’s relative and described the embarrassment and loss of trust in that moment as shocking, producing what they characterised as serious psychological trauma. Another discovered a technician with no direct health relationship had accessed their reports and said there was nothing at all they could do about it. The findings align with a growing literature, including a systematic review by Houser and colleagues showing that damage to patients’ sense of private space reduces emotional security and suppresses the sharing of sensitive health information — precisely the behaviour digital health systems are supposed to encourage.

The World Health Organization has warned for years that digital health technologies pose significant ethical risks: privacy and security of personal health data, data ownership and secondary use, algorithmic bias, weak informed consent, and a deepening digital divide. This study gives those abstract risks concrete faces. It also exposes a gap between design claims and lived reality. Türkiye’s national personal health record system is officially framed as a secure, patient-centered platform, yet participants perceived it as ethically fragile and uncontrollable. The researchers note that this perception matters because trust in digital health is not reducible to encryption strength or security protocols. It depends on procedural values — who has access, for what purposes, and whether those processes are visible and challengeable. When patients cannot see who opened their record, or cannot correct, delete, or restrict their data, they are pushed into a passive user position that corrodes the ethical foundation of care itself, including the nurse–patient and physician–patient relationships.

What makes the study notable is that patients did not respond by rejecting digital health. The fourth theme shows they want the systems rebuilt on ethical principles: transparency and traceability, with access records visible to patients; accountability, through independent oversight boards, effective complaint mechanisms, and patient rights units; data controllability, including the ability to correct errors and manage access permissions; clear, understandable informed consent replacing long legalistic terms of use; and widespread digital literacy education. Participants proposed concrete safeguards such as two-factor authentication, regular security testing, need-based access limited to those responsible for a patient’s care during duty periods, and short, plain-language consent texts that state in bullet points which data will be shared with whom and why. These demands echo the core objectives of established data protection frameworks — Türkiye’s KVKK, Europe’s GDPR, and the United States’ HIPAA — but the study suggests regulation on paper is not enough if patients cannot experience those protections in practice.

The findings also carry a pointed warning about digital equity. Although the sample was highly educated — every participant held at least a bachelor’s degree — participants still struggled with complex interfaces, password fatigue, and impenetrable medical terminology. The authors caution that individuals with lower educational attainment and lower digital literacy may face far steeper barriers, undermining equal access to care and turning digital transformation into a source of digital injustice. Recent evidence cited in the study suggests that teaching people how to use technology is insufficient on its own; effective interventions combine user-centered co-design, simple and accessible interfaces, culturally adapted educational content, and ongoing support from healthcare professionals. Without inclusive design and alternative access routes, the systems risk entrenching the very inequalities they promise to dissolve.

Perhaps the study’s most actionable implication concerns nurses. Because nurses maintain the closest and most continuous contact with patients, the authors propose that they could serve as an ethical interface between patients and digital health systems — building digital health literacy, raising awareness of data rights, detecting ethical concerns early, and supporting patients in decisions about their personal health data. The researchers acknowledge limitations: 13 participants at a single centre, a reliance on interview data vulnerable to social desirability bias, and a sample skewed toward highly educated users, which may shape how digital ethics is perceived and articulated. Future work, they recommend, should include more diverse samples, mixed-methods and longitudinal designs, and evaluations of interventions aimed at creating ethically safe digital health systems. But the central message stands. A sustainable, patient-centered digital health system cannot be built on technical infrastructure alone. It requires a holistic ethical architecture — transparency, accountability, genuine consent, data control, and attention to the emotional lives of users — because, as this study makes vividly clear, every unauthorized click on a health record is felt not as a data point, but as a breach of personal space.

Subject of Research: Patients' ethical experiences and trust in national digital health record systems

Article Title: Understanding Patients' Experiences of Digital Ethics in a Digitalised Healthcare System

Article References: Bayram, A., Bal, B., & Palese, A. (2026). Understanding Patients' Experiences of Digital Ethics in a Digitalised Healthcare System. Nursing Open, 13(9), Article e70736. https://doi.org/10.1002/nop2.70736

Image Credits: AI Generated

DOI: 10.1002/nop2.70736

Keywords: digital health, e-Nabız, patient experience, data privacy, digital ethics, health data security, informed consent, qualitative research, nursing, telehealth, data governance, digital literacy