Studies on various topics, such as sleep habits, the effects of certain diseases or sports, and brain research, utilize clinically sensitive patient data. Many of these studies require first-party access to databases for data manipulation – even though they only need the results of database queries.
The key challenge in processing patient data
In recent years, sleep medicine, brain research, and other domains have experienced a surge in interest in machine and deep learning-related research. These cutting-edge projects involve clinically sensitive data, sparking discussions on multiple fronts. A key challenge is finding the right balance between research openness, privacy concerns, and data security. This is a tricky task, to say the least. Research projects must adhere to the FAIR data principles. These are about ensuring that the data is findable, accessible, interoperable, and reusable. At the same time, researchers also must comply with the stringent General Data Protection Regulation (GDPR) of 2016/679.
The primary challenge is that GDPR places a strong emphasis on data privacy, necessitating explicit consent from individuals for data usage. While crucial for protecting individuals’ rights and privacy, this requirement sometimes conflicts with the openness and accessibility advocated by FAIR principles. Researchers often face a dilemma, aiming to make data findable and accessible while ensuring strict privacy compliance. Strict security protocols impede collaborative research as institutions can’t exchange data.
What is the reaction of the medical community?
Navigating this terrain isn’t easy. GDPR compliance can seem burdensome, especially for observational data. The balancing act involves making data available for advancements while safeguarding individuals’ privacy and maintaining the highest data security standards. It’s a tough challenge. The International Network of Privacy Law Professionals argues that “scientific research should not be unduly held back by data protection interests and legislation.” The reality is that medical researchers are hindered by GDPR, and the debate continues at both the European Union and member state levels. In this evolving landscape, researchers and institutions continually strive to adapt to meet these challenges. The ultimate goal is to harness the power of data-driven insights without compromising ethical standards—a journey of innovation and responsibility where medical research seeks to improve lives while respecting individuals’ privacy and data security.
Use sensitive patient data without consent
Confidential Cloud emerges as a game-changer in this scenario, providing a secure environment for managing and sharing sensitive data. It ensures data remains protected while remaining accessible for research purposes. Confidential Cloud enables harnessing the power of data without requiring patient consent, all without contradicting GDPR regulations.
