A5080230058- Ethics in Clinical Research
- Privacy-Preserving Technologies in Data
- Patient Dignity and Privacy
- Privacy, Security, and Data Protection
- Healthcare cost, quality, practices
- Health Policy Implementation Science
- Artificial Intelligence in Healthcare and Education
- Biomedical Ethics and Regulation
- Patient-Provider Communication in Healthcare
- Electronic Health Records Systems
- Palliative Care and End-of-Life Issues
- Health Systems, Economic Evaluations, Quality of Life
- Data Quality and Management
- Medical Malpractice and Liability Issues
- Healthcare Decision-Making and Restraints
- Healthcare Quality and Management
- Health, Environment, Cognitive Aging
- Global Cancer Incidence and Screening
- Cardiac, Anesthesia and Surgical Outcomes
- Digitalization, Law, and Regulation
- Global Health and Surgery
- Mental Health and Psychiatry
- Pluripotent Stem Cells Research
University Medical Center Utrecht
2015-2023
Utrecht University
2019-2023
Leidsche Rijn Julius Health Centers
2018
University Medical Center
2015
Cal Humanities
2015
To foster responsible data sharing in health research, ethical governance complementary to the EU General Data Protection Regulation is necessary. A framework for Big Data-driven research platforms will at least need consider conditions as specified a priori individual datasets. We aim identify and analyze these Innovative Medicines Initiative's (IMI) BigData@Heart platform.We performed unique descriptive case study into datasets participating BigData@Heart. Principle investigators of 56...
Patients and publics are generally positive about data-intensive health research. However, conditions need to be fulfilled for their support. Ensuring confidentiality, security, privacy of patients' data is pivotal. have concerns secondary use by commercial parties the risk misuse, reasons which they favor personal control data. Yet, potential public benefit highlights building trust attenuate these perceptions harm risk. Nevertheless, empirical evidence on how support research can...
Abstract The right to privacy has usually been considered as the most prominent fundamental protect in data-intensive (Big Data) health research. Within European Union ( eu ), however, data protection is gaining relevance a separate that should particular be protected by law. This paper discusses three differences between these two rights, which are relevant Firstly, rights based on of less context-sensitive nature and easier enforce. Secondly, positive obligation personal requires more...
Dynamic consent forms a comprehensive, tailored approach for interacting with research participants. We conducted survey study to inquire how participants evaluate the elements of consent, information provision, communication and return results within dynamic in hypothetical health data reuse scenario. distributed digital questionnaire among purposive sample patient panel members. Data were analysed using descriptive nonparametric inferential statistics. Respondents favoured potential manage...
Data and sample sharing constitute a scientific ethical imperative but need to be conducted in responsible manner order protect individual interests as well maintain public trust. In 2014, the Global Alliance for Genomics Health (GA4GH) adopted common Framework Responsible Sharing of Genomic Health-Related Data. The GA4GH is applicable data stem cell field, however, interpretation required so provide guidance this specific context. paper, International Stem Cell Forum Ethics Working Party...
IntroductionData linkage for health research purposes enables the answering of countless new questions, is said to be cost effective and less intrusive than other means data collection. Nevertheless, researchers are currently dealing with a complicated, fragmented, inconsistent regulatory landscape regard processing data, progress in hindered. AimWe designed qualitative study assess what different stakeholders perceive as ethical legal obstacles purposes, how these could overcome. MethodsTwo...
Sharing individual patient data (IPD) is a simple concept but complex to achieve due privacy and security concerns, underdeveloped guidelines, legal barriers. IPD additionally difficult in big data-driven collaborations such as Bigdata@Heart the Innovative Medicines Initiative, competing interests between diverse consortium members. One project within BigData@Heart, case study 1, needed pool from seven heterogeneous sets: five randomized controlled trials three different industry partners,...
Current challenges to sustaining public support for health data research have directed attention the governance of data-intensive networks. Accountability is hailed as an important element trustworthy frameworks Yet extent which adequate accountability regimes in networks are currently realized questionable. dominated by limitations a drawing board approach. As way forward, we propose stronger focus on learning achieve accountable governance. step that direction, provide two pathways: (1)...
<b><i>Background:</i></b> One of the primary aims medical disciplinary law is to improve quality care. However, decisions tribunals are not sufficiently analysed identify learning elements. <b><i>Aim:</i></b> This study aimed investigate frequency and nature complaints for specialty neurology which were upheld by learn from through an analysis factors contributed being upheld. <b><i>Design:</i></b> a retrospective,...