Charter of Core Values – The Data Donation Manifesto
Data Donation Manifesto
The Data Lake Charter of Core Values
BEING aware that ensuring proper access to health data is a cornerstone of the development of evidence-based medicine and a prerequisite for research and development;
RECOGNIZING the inadequacy of access mechanisms to health data, in particular the lack of effective access to data supporting scientific development;
AWARE of the growing socio-economic costs of insufficient protection of the right to privacy and the lack of agency of data subjects regarding the usage own data;
IDENTIFYING the difficult access to data (data poverty) as an important element that may aggravate the differences between patient populations in access to new methods of prevention, diagnosis and treatment;
NOTING the importance of the above-mentioned problem and the urgent need for cooperation between people of good will and institutions interested in acting for the common good;
DATA LAKE is therefore building a medical data exchange system that promotes the idea of honorary data donation, donor privacy, unbiased and representative data sets, and stakeholder participation in the medical data economy.
We believe that the implementation of the idea of honorable data donation should be based on the following pillars, and we commit to building our system based on the principles outlined in the following Data Donation manifesto:
We believe that being able to consent to the use of – or dispose of your data – is a fundamental human right.
We believe in and commit to building a system in which Data donation is voluntary and based on informed consent by data donors to transfer their data for the purposes of scientific research, research and development and other medical research.
We believe in and commit to building a fully transparent and verifiable system of consent activities, guaranteed by the technological solutions used.
We commit to ensuring the highest levels of security, privacy and anonymization in order to protect any sensitive data in our custody.
We commit to prioritizing ethical decisions when processing and transferring data.
We commit ourselves to the goal of wide participation of institutions and people of good will, giving agency to stakeholders including in particular representatives of patients and researchers.
We commit to respecting and aligning with GDPR, GDA and EHDS guidelines, as well as flexibly responding to future regulations to ensure compliance.
We express our hope and it is our determined goal that the implementation of a data donation system based on the indicated pillars may significantly contribute to ensuring proper access to health data, ensuring acceleration of science development and economic growth, with the simultaneous adequate protection of individual rights.