Dealing with Data Management and Compliance in ASCERTAIN

30. July 2024

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Ethical and Secure Data Use in Health Research

Effective data management is a cornerstone of modern health research, especially when addressing privacy and compliance with ethical standards. In the digital health ecosystem, where data flows rapidly and innovations are constantly emerging, ASCERTAIN is committed to ensuring that data handling is both ethical and secure. Our mission to improve the affordability and accessibility of innovative health technologies in Europe is underpinned by rigorous data management practices that adhere to EU Ethics and Data Protection guidelines, including the GDPR (General Data Protection Regulation), which harmonizes data privacy laws across Europe.

The Importance of Ethical Data Management

Ethical data management is not just a regulatory requirement but a moral obligation. It ensures that patients’ sensitive health information is treated with the utmost respect and confidentiality. Within ASCERTAIN, we prioritize the dignity and rights of individuals by implementing strict protocols for data collection, storage, and analysis. These protocols are designed to safeguard personal data, ensuring that it is used solely for the intended research purposes and that individuals’ privacy is never compromised.

Adhering to EU Data Protection Regulation

The GDPR, officially known as REGULATION (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016 on the protection of natural persons with regard to the processing of personal data and on the free movement, has been applicable across all EU member states since May 25, 2018, and sets the standard for data protection in Europe. At ASCERTAIN, compliance with GDPR is integral to our operations. We ensure that all personal data is processed lawfully, transparently, and for a specific purpose. Consent from data subjects is obtained whenever required, and they are informed about how their data will be used, stored, and shared.

Our legal consortium partners provide continuous assistance to ensure that the collection and further processing of personal data for the purposes of the research and innovation action remain at all times compliant with the provisions of the GDPR and applicable national data protection laws, especially with regard to data storage and transmission, automated processing, de-identification methods, access restrictions, and technical and organizational security measures.

Data Sources:

  • Interviews and questionnaires
  • Cancer registries
  • Medical records
  • Literature reviews

To protect individuals’ privacy, data used in the project is de-identified and aggregated.

Ensuring Secure Data Sharing and Analysis

Data sharing is vital for advancing health research but must be done securely. ASCERTAIN employs state-of-the-art encryption methods to protect data during transmission and storage. Our data management systems are designed with multiple layers of security to prevent unauthorized access and ensure data integrity.

When sharing data with research partners or stakeholders, we use secure channels and ensure that all parties adhere to the same stringent data protection standards. Data sharing agreements clearly outline the responsibilities of each party and the protective measures to be taken.

Fostering a Culture of Responsibility

Beyond technical measures, fostering a culture of responsibility among the team members is crucial. This ensures that everyone involved in the project understands their role in maintaining data security and upholding ethical standards.

Conclusion

In the fast-evolving digital health ecosystem, the ASCERTAIN project is committed to navigating the complexities of data management and compliance with diligence. By adhering to EU Ethics and Data Protection guidelines, implementing robust security measures, and fostering a culture of responsibility, we aim to ensure that health data is managed ethically and securely. This not only builds trust with patients and stakeholders but also paves the way for groundbreaking advancements in health technologies that are both accessible and affordable.


Author

Giulio Galiazzo, Marketing Specialist Chino.io

Chino.io is an Italian cyber security and cloud technology company founded in 2014 with the mission of helping health application developers solve security and privacy law compliance issues when dealing with health sensitive data in the cloud. Chino SRL has created a software development platform called Chino.io. The platform offers developers a set of APIs to store, share and manage sensitive health data securely and fully comply with all data protection laws, including GDPR, ePrivacy and HIPAA.

Role in the ASCERTAIN project: Data management & ethics in WP2.