April 26, 2022

During the Healthcare Data Innovation Council meeting of the 26th of April 2022, the discussion revolved around the details of the table of contents of the white paper. Members of the Council provided feedback on the topics and suggestions on how to move forward in drafting the document.

After a recap of the progress of the Council, Andrea presented the main narrative of the white paper that was built on the feedback and interviews conducted until now. The story line includes the wave of transformation that is generating challenges and opportunities for healthcare systems, the emerging motions and regulations reshaping the structure and mechanisms for data governance, and the cultural and technical transformations which may amplify the collective value of sharing data.

The main narrative and the headings and sub-headings of each chapter were presented.

Following the discussion on the TOC, Julian Isla, founder of Foundation 29, presented the work of his non-for-profit foundation that aims at “bringing data back to patients”. Foundation 29 promotes the concepts of decentralisation of health data and the idea of health data pods. These concepts could disrupt the gravity force which is dominating health systems returning the value of innovation back to individuals who contributed to the innovation in the first place, with their data.