The Congress of Users' Representatives (RU) organized by FHP

Mélanie Pierre
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Better World was fortunate enough to take part in the 14th edition of the Users' Representatives (RU) congress organized by the FHP, on Thursday September 28. André Tonic, Senior Business Developer, took part in the 3rd round table alongside Héla GHARIANI and Arthur DAUPHIN to discuss the contribution of digital technology to the User Representative and present how Better World is responding to the challenges of digital healthcare.

Findings and innovative ideas were shared to improve the quality of care and strengthen the role of patients in healthcare.

The new mission of the user representative

Speakers stressed the importance of the emergence of new players such as patient companions and peer helpers. These "resource patients" can co-construct digital and educational tools to improve care. It is essential to consider these players as complementary partners to the RU, rather than as competitors.

The work would involve creating spaces for exchange, gaining the support of healthcare institutions, fostering collaboration and increasing patient visibility. Listening to and empathizing with patients are recognized as crucial elements, requiring more teaching for healthcare professionals.

The contribution of digital technology for user representatives

Digital integration in the healthcare sector raises important questions. There are concerns about clarity and data protection in the context of the proliferation of healthcare start-ups. The UK has a crucial role to play in promoting dialogue on these issues.

For Better World, specific questions were raised, including the form of data collection on the platform, the location of servers, ethical limits and the long-term future of data. UK involvement in the use of the Better World platform and participation in the Commissions Des Usagers (CDU) were encouraged.

How do we deal with the end of life in our healthcare institutions?

End-of-life care was discussed, with an emphasis on anticipation and the importance of involving the RU to examine what has gone well and what can be improved during care. Communication, both with patients and their caregivers, is essential. It was emphasized that care must extend to relatives after death, particularly from a psychological point of view.

In addition, we felt it was necessary to gather feedback from families to help healthcare establishments improve their care.

What role for healthcare democracy in the regions?

Democracy in healthcare was highlighted through a case study involving a group of healthcare establishments. Patients were put at the heart of decision-making through the analysis of their responses to simplified questionnaires and the creation of assemblies where they could contribute to the definition of actions to be implemented.

For Better World, this initiative is strongly encouraged in healthcare establishments. Awareness of these practices could be raised among healthcare professionals and UCs.


In conclusion, FHP's latest congress of user representatives highlighted the importance of patient involvement, the crucial role of the RU, and the challenges to be met in the digital and end-of-life fields. These ideas pave the way for better patient care and greater healthcare democracy. This subject is at the heart of our strategy at Better World, which today leads us to collect and analyze patient and family caregiver verbatims in over +700healthcare and medico-social establishments.

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