2023-12-17 23:31:32
This joint HCSP/HCERES report is built around the evaluation of the HCSP and HCERES with common issues and perspectives.
The HCSP evaluation was structured around the strategic objectives of PNMR 3 with the following conclusions:
- PNMR 3 made it possible to consolidate effective organizations, developed and then structured by the first PNMR, but an identical renewal of the model would be insufficient to overcome the remaining limits and meet emerging challenges;
- The massive investments are unanimously welcomed with some reservations in a context where healthcare spending is on an upward trend and where the impact of improved diagnosis and the introduction of new therapies remains uncertain;
- Significant progress has been made in the diagnosis and screening of rare diseases, however several levers remain to be activated to minimize diagnostic error;
- A real improvement in the treatment of rare diseases has been noted, despite insufficient development of the link between healthcare and medico-social actors;
- Several key issues remain to be addressed, at the European level, on the question of development and access to treatments;
- The development of digital tools has accelerated significantly but continues to encounter problems linked to persistent fragmentation of data, and regulatory and technical issues.
- PNMR 4 must make it possible to plan ambitiously on the contribution of innovations to prepare by putting in place the conditions necessary for their adoption.
A change of paradigm and scale seems necessary to overcome the persistent difficulties to which the current model is no longer able to respond by relying in particular on the European level, and on technological and organizational innovations in order to reflect on the model. economics of the treatment of rare diseases, on methods and on the integration of innovation.
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