Perception gaps between patients and practitioners regarding safety, data security, and ethics of intracranial electrode implantation: a multi-center study
4 affiliations
- 1Department of Neurosurgery, Beijing Tiantan Hospital, Capital Medical University, Beijing, China
- 2Department of Psychiatry, Peking University Sixth Hospital, Peking University, Beijing, China
- 3Institute of Science and Technology for Brain-Inspired Intelligence, Fudan University, Shanghai, China
- 4Department of Functional Neurosurgery, Beijing Neurosurgical Institute, Capital Medical University, Beijing, China
Abstract
Background: Deep brain stimulation (DBS), the most widely adopted form of chronic intracranial neuromodulation, has become a standard treatment for movement disorders, yet how patients and practitioners perceive associated safety risks, data security concerns, and ethical implications remains poorly understood. Misalignment between patient expectations and clinical reality can undermine informed consent, compromise treatment adherence, and erode public trust.
Methods: We conducted a multi-center study combining (1) a cross-sectional survey of 327 DBS patients and 161 practitioners (123 Chinese, 38 international) across 30 Chinese provinces and 11 countries, including factual knowledge assessment and information source items, (2) semi-structured interviews with 18 patients and 12 practitioners, and (3) an informed consent process audit at 6 DBS centers. Ordinal logistic regression controlled for age, gender, and education. Qualitative data were analyzed using reflexive thematic analysis.
Results: After adjusting for demographic confounders, significant perception gaps persisted between patients and practitioners for surgical risk (adjusted OR 1.89, 95% CI 1.28–2.79), device risk (aOR 1.72, 1.18–2.52), and data security concerns (aOR 1.94, 1.32–2.85). Patients scored significantly lower on factual DBS knowledge (mean 2.67/8 vs. 6.84/8, p < 0.001), which partially mediated the perception gap (proportion mediated 47.0%, p < 0.01). Interviews with 30 stakeholders revealed four explanatory mechanisms: patients delegated risk assessment to surgeons, therapeutic urgency overrode deliberation, awareness of neural data risks was absent, and practitioners experienced tension between disclosure and patient wellbeing. A consent audit across 6 centers confirmed that conversations averaged 14 min, rarely addressed data security, and never assessed comprehension. Despite these divergences, both groups showed strong consensus on protecting vulnerable populations (p = 0.254).
Conclusions: DBS patients systematically underestimate risks compared to practitioners, driven partly by knowledge deficits that current informed consent processes do not address. These findings provide empirical evidence for redesigning consent practices and developing governance frameworks for DBS and the broader family of implantable neurotechnologies.
Supplementary Information: The online version contains supplementary material available at https://doi.org/10.1186/s12916-026-05116-z.
Related
- Baseline Assessment and Post-Intervention Evaluation of Knowledge Regarding Oral Submucous Fibrosis Among Medical and Dental Practitioners
- Post-implantation 3-T MRI in patients with an epicranial stimulation device: image quality and deep learning-based electrode reconstruction
- The Effects of Environmental Health Literacy and Climate Change‐Health Perception on Climate Change‐Health Nursing Practice Among Korean Community Health Practitioners: A Descriptive Correlational Study
- Staff Nurses’ Perception Regarding Nurse Managers Green Transformational Leadership and Its Influence on their Organizational Citizenship Behavior
- Association between uncertainty regarding malignant risk and anxiety in patients with pulmonary nodules: a serial mediation analysis of illness perception and rumination
BibTeX
@article{yin2026perception,
title = {{Perception gaps between patients and practitioners regarding safety, data security, and ethics of intracranial electrode implantation: a multi-center study}},
author = {Zixiao Yin and Guanyu Zhu and Tianqi Hu and Tianxue Hu and Rujin Wang and Jing Fu and Anchao Yang and Xueqin Wang and Shouyan Wang and Jianguo Zhang and Huanguang Liu},
journal = {BMC Medicine},
year = {2026},
month = aug,
doi = {10.1186/s12916-026-05116-z},
url = {https://doi.org/10.1186/s12916-026-05116-z},
note = {CC BY-NC-ND 4.0},
}
RIS
TY - JOUR
TI - Perception gaps between patients and practitioners regarding safety, data security, and ethics of intracranial electrode implantation: a multi-center study
AU - Zixiao Yin
AU - Guanyu Zhu
AU - Tianqi Hu
AU - Tianxue Hu
AU - Rujin Wang
AU - Jing Fu
AU - Anchao Yang
AU - Xueqin Wang
AU - Shouyan Wang
AU - Jianguo Zhang
AU - Huanguang Liu
PY - 2026
DA - 2026/08/06
JO - BMC Medicine
DO - 10.1186/s12916-026-05116-z
UR - https://doi.org/10.1186/s12916-026-05116-z
AB - Background: Deep brain stimulation (DBS), the most widely adopted form of chronic intracranial neuromodulation, has become a standard treatment for movement disorders, yet how patients and practitioners perceive associated safety risks, data security concerns, and ethical implications remains poorly understood. Misalignment between patient expectations and clinical reality can undermine informed consent, compromise treatment adherence, and erode public trust. Methods: We conducted a multi-center study combining (1) a cross-sectional survey of 327 DBS patients and 161 practitioners (123 Chinese, 38 international) across 30 Chinese provinces and 11 countries, including factual knowledge assessment and information source items, (2) semi-structured interviews with 18 patients and 12 practitioners, and (3) an informed consent process audit at 6 DBS centers. Ordinal logistic regression controlled for age, gender, and education. Qualitative data were analyzed using reflexive thematic analysis. Results: After adjusting for demographic confounders, significant perception gaps persisted between patients and practitioners for surgical risk (adjusted OR 1.89, 95% CI 1.28–2.79), device risk (aOR 1.72, 1.18–2.52), and data security concerns (aOR 1.94, 1.32–2.85). Patients scored significantly lower on factual DBS knowledge (mean 2.67/8 vs. 6.84/8, p < 0.001), which partially mediated the perception gap (proportion mediated 47.0%, p < 0.01). Interviews with 30 stakeholders revealed four explanatory mechanisms: patients delegated risk assessment to surgeons, therapeutic urgency overrode deliberation, awareness of neural data risks was absent, and practitioners experienced tension between disclosure and patient wellbeing. A consent audit across 6 centers confirmed that conversations averaged 14 min, rarely addressed data security, and never assessed comprehension. Despite these divergences, both groups showed strong consensus on protecting vulnerable populations (p = 0.254). Conclusions: DBS patients systematically underestimate risks compared to practitioners, driven partly by knowledge deficits that current informed consent processes do not address. These findings provide empirical evidence for redesigning consent practices and developing governance frameworks for DBS and the broader family of implantable neurotechnologies. Supplementary Information: The online version contains supplementary material available at https://doi.org/10.1186/s12916-026-05116-z.
SN - 1741-7015
ER -