WAYFIND-R has the aim to advance science and provide the medical and scientific community worldwide with access to high-quality data, supporting data sharing and collaborations across research groups. Physicians and academic researchers can access and analyse anonymised data from the WAYFIND-R registry, which contains valuable medical information from patients who have given consent for further scientific research.
WAYFIND-R´s data governance defines 6 principles to enable reuse of health data and to ensure data are used in a responsible and ethical manner.
Ensuring responsible use of WAYFIND-R data
WAYFIND-R complies with FAIR (findable, accessible, interoperable, reusable) data principles and is dedicated to ensuring that the data collected are managed and shared in a safe and responsible manner with the medical and scientific community. As a result, numerous measures are in place to secure participants’ private information and to safeguard against their data being used for purposes other than approved research:
Scientific research purposes for any data access request are within the scope of the patient's informed consent.
Research proposals to WAYFIND-R will be subject to a scientific merit review by an Independent Data Access Committee.
Participant data will be anonymised. This means that any potentially identifiable details will be removed or altered to prevent the identification of participants.
Participant data will be held securely, with strict local privacy regulations and stringent European data protection laws (GDPR) applied
WAYFIND-R provides a secure computing environment with technical and operational measures in place to ensure security and privacy.
Data sharing and use agreement to ensure research purpose is within the scope of the patient consent.
For transparency, lay summaries of research projects are published on the website and researchers are encouraged to publish their research findings for the benefit of society
Independent Data Access Committee
The Independent Data Access Committee has a central role in the data governance framework facilitating the secondary use of anonymised real-world data from WAYFIND-R. The Committee is responsible for reviewing research proposals from academic researchers to ensure data is used in a responsible and ethical way. The Committee is a multi-disciplinary team with experts in medical oncology, epidemiology and a patient advocate.
On the basis of review criteria and the scientific merit of the proposal, the Committee will grant researchers access to a secure computing environment within the WAYFIND-R Data Sharing and Collaboration Platform to perform advanced analytics.
The Access Manager supports the Independent Data Access Committee with administrative tasks for managing data access requests from academic researchers.