Bridging the Gap: How AI for Health Workshops Foster Public-Private Collaboration.

Case Study: Rare Diseases Workshops

Uniting Forces Against Diagnosis Wandering

The collective intelligence workshop convened by AI for Health has taken a significant step towards addressing the pressing issue of diagnosis wandering in rare diseases. With approximately 30 million people across Europe affected by these conditions, the urgency for innovative solutions is palpable. 

Introduced by Philippe Berta, French Deputy and President of the Rare Diseases Study Group at the French National Assembly, the workshop brought together a mix of stakeholders—medical practitioners, researchers, public institutions, patient organisations, pharmaceutical companies, data specialists, and startups. Their collective goal was clear: to forge practical solutions to the diagnostic wandering that afflicts patients with rare diseases. This workshop was based on an initial one held in June. 

Public-private partnerships represent a much needed transformative shift in approach towards addressing complex healthcare challenges. By integrating perspectives from various sectors and throughout the patient journey, it enables a more comprehensive and cooperative path towards shared objectives.

A Convergence of Minds

The workshop used design thinking methodology, known for its user-centric innovation, which fostered a collaborative environment. The diverse group of 20 public and private sector experts thus embarked on a structured journey to identify actionable solutions to improve the diagnosis of rare diseases. 

The participants divided into two focus groups. The first group was tasked with exploring a federated data management approach to improve coordination and interoperability among rare disease databases. Their goal was to look for solutions to improve quality and accessibility of data for research and diagnosis, and also to complement existing and future centralised approaches. 

The second group focused on optimising the detection and characterisation of rare diseases through the development of healthcare professional training. This was based on the recognition of the critical role that early detection plays in the management of rare diseases and the need for a more informed and engaged healthcare workforce.

Throughout the workshop, participants engaged in ideation and prioritisation of solutions, working in sub-groups to foster deeper discussions and more focused outcomes. The session concluded with a collective sharing and conclusion session, where the groups came together to present their findings and proposed actions.

Tangible Outcomes and Future Horizons

The workshop's outcomes were both practical and forward-looking, setting a foundation for tangible improvements in the diagnosis of rare diseases. You can find the conclusions here.

The restitution was submitted to the rare diseases’ study group at the French National Assembly and to Orphanet (Inserm), to contribute to their work on the presently released 4th National Plan on Rare Diseases. 

A third workshop is also in discussion to further refine the prioritised solutions, demonstrating a commitment to continuous improvement and innovation.

The Power of Collective Intelligence

The AI for Health workshop on rare diseases exemplified how collective intelligence can drive meaningful progress in healthcare. By bringing together diverse expertise across private and public sectors and fostering a collaborative environment, the workshop participated in propositions for future initiatives aiming to improve the lives of those affected by rare diseases. 

If you are interested in taking part in our collective intelligence workshops in the future, please get in touch here, we'd love to hear from you. Together, we can continue to bridge the gap between the public and private sectors, fostering innovation and improving healthcare outcomes for all.