The launch of the portal marks a new era in ethical, patient-centered and consent-based research to protect patients’ autonomy and privacy.
Privacy and innovation can coexist – we can both harness the power of data-driven insights and ultimately improve patient outcomes while maintaining the highest ethical and privacy standards.” – Dinidh O’Brien WARSAW, POLAND, May 25, 2023/einpresswire.com / – Poles donate your data fund and EU-funded startup data lake – backed by a coalition of over 30 health and patient organizations – today announced the launch of donateyourdata.io , an international portal for the secure donation of medical data for research purposes. This groundbreaking initiative empowers individuals worldwide to become “Data Heroes” by contributing their medical data to scientific research while maintaining privacy and control over their information.
DonateYourData.io aims to revolutionize the medical research landscape by providing a secure and user-friendly platform for individuals to donate their medical data. Requests for data are evaluated and approved by a transparency board – primarily made up of patient organizations – to ensure that any research conducted on the donated data is in the best interests of patients. By utilizing Data Lake’s advanced technological integration, the portal also ensures the highest standards of data protection and security.
The collaboration between the Donate Your Data Foundation, Data Lake and the coalition of health and patient organizations underscores a collective commitment to advancing medical research through ethical data sharing. DonateYourData.io will connect researchers with a wealth of anonymized data, accelerating the discovery of new treatments, diagnostics and healthcare solutions. It also allows researchers to share existing data repositories with other research entities, creating a new “circular economy” of medical data. This model of data altruism is also promoted by the European Commission in the new Data Governance Act (DGA) regulation and is consistent with the principles of the General Data Protection Regulation (GDPR), such as the consent of the data subject and the right to be forgotten.
Dinidh O’Brien, Head of Public and International Relations for The Donate Your Data Foundation, said: “DonateYourData.io is a game-changer for citizen science and crowdsourced medical research. By enabling individuals to contribute their medical data securely and anonymously, we can harness the power of data-driven insights and ultimately improve patient outcomes while maintaining the highest ethical and privacy standards.The research our system will empower has the potential to save lives, and we are convinced that a consent-based , patient-centered approach is both the ethical way to achieve this, but will make all the difference when it comes to adoption.”
Dr. Wojciech Sierocki, CEO of Data Lake, added: “We are proud to partner with the Donate Your Data Foundation and this coalition of health and patient organizations. Our advanced technology will ensure the safe and responsible management of donated donations. medical data that provides individuals opportunity to make a real difference in the global quest for better healthcare solutions. We are confident that our system will succeed where others have failed because we do not require patients to track and upload or share their data themselves. Instead, integrating we directly with healthcare providers with more than 200 in our network in Europe alone so far and a current reach of more than 25 million patients.”
The DonateYourData.io portal is now live and individuals worldwide are encouraged to visit the website and become data heroes by consenting to the use of their medical data to advance scientific research.
About the Donate Your Data Foundation:
Donate Your Data Foundation (Fundacja Podaruj Dane) – is a non-profit organization dedicated to promoting ethical medical data donation in Poland and worldwide. By partnering with healthcare providers, research institutions and the general public, the foundation seeks to advance medical research and improve patient outcomes through the responsible use of data.
About Data Lake:
Data Lake is a leading technology provider in medical data management, offering secure and scalable data access solutions for entities conducting legitimate and patient-focused medical research. As a founding member of the Ethical Data Coalition, Data Lake is committed to promoting the responsible use of data and ensuring the highest standards of privacy and security.
Donate your data base
Dinidh O’Brien – Head of Public & International Relations
Dr. Wojciech Sierocki – CEO
Donate Your Data Foundation
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