Related Experiment Video

Updated: Jul 4, 2026

Working with Human Tissues for Translational Cancer Research

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

Abstract

None:

Consent is essential in health data donation because it defines the conditions under which donated data may be used. This raises the question of how consent and data use conditions can be represented in a standardized way.

Methods:

This work analyzes consent requirements for directed and undirected data donations within the Health Data Donation Space developed in the Smart FOX project. We evaluated the published concepts of Common Conditions of Use Elements (CCEs) and Digital Use Condition Profiles (DUCs) in the context of health data donation and examined the use of FHIR for machine-readable implementation.

Results:

Ten of the twenty original CCE terms were applicable for modelling data use conditions in a data donation scenario, but they could not adequately represent all relevant aspects of data usage; FHIR v4 only partially supported the expression of DUC profiles.

Conclusion:

While CCEs and DUCs provide a useful starting point, extensions and complementary approaches are needed, as FHIR v4 alone is insufficient to fully represent data use condition profiles.

Keywords:

Data altruism Digital Consent Management Ethics European Health Data Space

More Related Videos

Abbiategrasso Brain Bank Protocol for Collecting, Processing and Characterizing Aging Brains

Abbiategrasso Brain Bank Protocol for Collecting, Processing and Characterizing Aging Brains

Published on: June 3, 2020

Related Concept Videos

Ethical Standards I

Ethical 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,...

Ethical Standards II

Ethical 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...

Purpose of Health Records II

Purpose of Health Records II

Health records serve various essential purposes in the healthcare system. Here are some key purposes:

Purpose of Health Records I

Purpose 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:

Ethics in Research

Ethics 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.

Bone Marrow Sampling and Transplants

Bone 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...

Articles linked to this work by shared authors, journal, and citation graph.

Use and impact of risk-based eligibility models in low-dose computed tomography lung cancer screening: a systematic review.

Public health reviews·2026

Items identified by expert physicians for the development of the criteria for the assessment of disease activity for adult-onset Still's disease: results of a web-based Delphi study informing the development of the European Alliance of Associations for Rheumatology (EULAR) criteria for the assessment of disease activity in these patients.

EULAR rheumatology open·2026

Patient awareness and perception of cardiovascular risk in rheumatic and musculoskeletal diseases: results from an international survey.

EULAR rheumatology open·2026

Clinical, biological, and radiological changes under therapy, and criteria for clinical response and remission in adult-onset Still's disease: a systematic literature review informing the development of the European Alliance of Associations for Rheumatology (EULAR) criteria for assessing disease activity.

EULAR rheumatology open·2026

The Semmelweis Framework: structuring evidence foundations and expert opinion in clinical practice guidelines.

BMC medical research methodology·2026

The Survivorship Passport for childhood cancer survivors: improvements and experience within several European PanCare projects.

Journal of cancer survivorship : research and practice·2026

See all related articles