February 15, 2022
The Healthcare Data Innovation Council Kick-off meeting held on the 15th of February 2022, set the scene for the activities of the Council to be conducted between February and June 2022 that will lead to the production of a white paper capturing the topic of data usage in healthcare.
26 participants comprising healthcare providers, patient organisations, academia and research organisations, industry representatives, platform developers, lawyers and experts of ethics and bio-ethics took part in an interactive conversation sharing their perspectives on data usage in health.
Elena Bonfiglioli, Microsoft Business Leader of Health and Life Sciences gave an introductory speech. She pointed to power of data and data-driven health solutions and discoveries, to their role in accelerating, supporting and codifying innovation practices and to the need of shaping a new regulatory framework having people’s trust and supporting research of the highest quality. In highlighting data’s characterization as a foundational resource, Elena stimulated discussion in the Council with three questions:
- How do we design governance mechanisms to manage data, able to provide harmonization and legal clarity?
- How do we tackle, at the EU level, the democratization of knowledge and privacy-enhanced collaboration to enhance competitiveness of research and to collaborate with the rest of the world in transparency?
- How do we address fragmentation at the European level, elaborating grounded and specific models (as the GDPR framework) able to respond to the needs of the entire medical community?
Andrea Pescino, Stratejai’s cofounder and partner, proceeded with the Council Journey presentation, displaying goals, scenarios and operational framework, eventually exposing three case studies. Andrea pointed out that the involvement of different actors is functional to elaborate comprehensive recommendations as well as to showcase stories and best practices.
In the final part of the meeting, open to discussion among the participants, it emerged consensus upon the fact that there are barriers to research and that research with data permeates primary and secondary uses and offers opportunities, but it can also involve legal and ethical risks. It is thus important to balance patients’ rights and pursue the common good.