Related Experiment Video
Updated: Jul 4, 2026
07:48
Working with Human Tissues for Translational Cancer Research
Published on: November 26, 2015
Modelling Consent and Data Use Conditions in a Health Data Donation Space
Karl Kreiner1, Hannah Vinatzer1, Nadja Kartschmit2
1AIT Austrian Institute of Technology GmbH, Austria.
Studies in Health Technology and Informatics
|July 3, 2026
Summary
Standardizing health data donation requires robust consent and data use conditions. Current methods like Common Conditions of Use Elements (CCEs) and Digital Use Condition Profiles (DUCs) need extensions for full FHIR implementation.
Area of Science:
- Health Informatics
- Data Governance
- Bioethics
Background:
- Informed consent is crucial for ethical health data donation, dictating data usage terms.
- Standardized representation of consent and data use conditions remains a challenge in health data sharing.
Purpose of the Study:
- To analyze consent requirements for directed and undirected health data donations.
- To evaluate the suitability of Common Conditions of Use Elements (CCEs) and Digital Use Condition Profiles (DUCs) for health data donation.
- To examine the machine-readable implementation of these conditions using FHIR.
Main Methods:
- Analysis of consent requirements within the Smart FOX project's Health Data Donation Space.
- Evaluation of CCEs and DUCs in the context of health data donation scenarios.
- Assessment of FHIR (Fast Healthcare Interoperability Resources) for implementing data use conditions.
Main Results:
- Only 10 out of 20 original CCE terms were applicable for health data donation use conditions.
- Existing CCEs and DUCs could not fully capture all necessary data usage aspects.
- FHIR v4 demonstrated partial support for expressing DUC profiles, indicating limitations.
Conclusions:
- CCEs and DUCs offer a foundational framework for health data donation conditions.
- Extensions and complementary methods are necessary to fully represent data use conditions.
- FHIR v4 alone is insufficient for comprehensive machine-readable implementation of data use condition profiles.
Related Concept Videos
01:25Ethical Standards I
The American Nurses Association (ANA) created and implemented the first nationally accepted Code of Ethics for Nurses with Interpretive Statements. The Code of Ethics is a living document regularly updated by the ANA and establishes an ethical standard that is non-negotiable for nurses in all roles and settings.
The Code of Ethics provisions outline the nurse's duty to the patient, the healthcare team, the profession, and society. The Code's fundamental principles include advocacy,...
The Code of Ethics provisions outline the nurse's duty to the patient, the healthcare team, the profession, and society. The Code's fundamental principles include advocacy,...
01:23Ethical Standards II
Ethical standards are the backbone of nursing practice, guiding nurses as they interact with patients, families, and colleagues. These standards are crucial for providing safe, empathetic care centered on the patient's needs.
Nurses are entrusted with upholding various ethical principles and standards. Nurses forge solid therapeutic relationships using trust, empathy, autonomy, confidentiality, and professional competence.
Confidentiality is crucial, embodying respect for individual privacy and...
Nurses are entrusted with upholding various ethical principles and standards. Nurses forge solid therapeutic relationships using trust, empathy, autonomy, confidentiality, and professional competence.
Confidentiality is crucial, embodying respect for individual privacy and...
01:19Purpose of Health Records II
Health records serve various essential purposes in the healthcare system. Here are some key purposes:
01:11Purpose of Health Records I
The vital purpose of health records is to provide a complete and accurate account of a patient's medical history, including communication, diagnostic and therapeutic orders, care planning, research, and quality review.
Here's a breakdown of how health records serve these purposes:
Here's a breakdown of how health records serve these purposes:
01:56Ethics in Research
Today, scientists agree that good research is ethical in nature and is guided by a basic respect for human dignity and safety. However, this has not always been the case. Modern researchers must demonstrate that the research they perform is ethically sound.
01:22Bone Marrow Sampling and Transplants
Bone marrow transplant is a potential cure for several diseases, including cancer and specific genetic disorders. Notably, this procedure is applicable for patients suffering from aplastic anemia, certain types of leukemia, severe combined immunodeficiency disease (SCID), Hodgkin's disease, non-Hodgkin's lymphoma, multiple myeloma, thalassemia, sickle-cell disease, and certain cancers.
The transplant begins with high doses of chemotherapy and radiation treatment, which aim to destroy the...
The transplant begins with high doses of chemotherapy and radiation treatment, which aim to destroy the...