Data to impact: connecting the future of European pediatrics with Alberto Tozzi

Severe interpretation of European regulations creates difficulties in data sharing and collaborative research activities.

The European Union is developing the European Health Data Space as a crossroad for data exchange between EU countries, supporting both patient mobility and secondary use of data for clinical research.

The European Health Data Space approach will require hospitals and data providers to create catalogs of available data for multi-center studies and clinical research.

The missing element in the European Health Data Space initiative is a concrete solution for connecting data catalogs across institutions.

Bambino Gesù Children's Hospital is one of the largest pediatric hospitals in Europe with approximately 700 beds for children across all specialties.

Bambino Gesù Children's Hospital has approximately 2.5 million patient encounters per year.

The hospital receives many patients from Eastern Europe, the Mediterranean area, and other continents.

Implementation of healthcare innovation takes longer than initially anticipated; early expectations of 12-year timelines proved impossible because the challenge is not technology but rather having the right people and relationships.

The pandemic created a barrier to innovation activities as investing in risky business became unpopular during that period.

Quality improvement alone is insufficient for achieving healthcare objectives; innovation is necessary to improve children's lives and address diseases that cannot currently be diagnosed or supported.

AI is based on data that represents humans, therefore AI is fundamentally under human control rather than an autonomous threat.

Understanding the foundational elements of AI is essential for proper governance of the technology.

Epidemiology principles state that clinical decisions should be made together with patients, but this rarely happens in practice.

Patients and families consistently request more information about diagnoses and therapies when given the opportunity to speak with healthcare providers.

If healthcare providers do not engage patients adequately, families will independently seek information from sources like ChatGPT, which can be problematic for the doctor-family relationship.

Patients and families are eager to be supportive and contribute to healthcare, representing an underutilized resource.

Healthcare providers should listen carefully to both spoken and unspoken communication from patients and families, as this represents valuable information and data ready for action.

Current healthcare data collection misses what happens between medical visits, but patients can provide this information through their stories and wearable devices, creating dynamic, granular datasets.