Launch of the Patient Partnership Hub: Enhancing Patient-Clinician Collaboration in Healthcare
October 2024EURORDIS-Rare Diseases Europe is proudly announcing the launch of our Patient Partnership Hub – an online platform that curates and facilitates access to resources and tools that can support the implementation of patient partnership in healthcare.
In the context of the European Reference Networks (ERNs), patient partnership plays a pivotal role in shaping the Networks’ collaborative efforts.
The Patient Partnership Framework for the ERNs defines such partnership as “a mutual relationship between patients and health professionals, where input from people living with a rare disease or caring for someone with a rare disease routinely and formally informs the Networks’ collaborative activities and decision-making.”
The Framework goes on to outline that patient partnership “implies considering health professionals and patients involved in the Networks as equal partners in all ERN activities and domains (e.g. Network planning and evaluation, healthcare, training, education, outreach and information and clinical research).”
Developed closely alongside patient representatives and project managers involved in European Reference Networks (ERNs), our Hub will be a useful tool for anyone interested in learning about methods, guidance, tools and good practices to facilitate patient-clinician collaboration in the ERNs and other healthcare networks, as well as in the design of hospital services.
Start exploring the Patient Partnership Hub
Highlighting its convenience and accessibility, the Patient Partnership Hub is positioned as a one-stop solution for those seeking to enhance patient-clinician collaboration. By curating and classifying essential resources in a single location, it will simplify access and increase the use of these resources.
At the moment, the Hub features resources and tools to support patient partnership in the ERNs mostly developed by EURORDIS, but progressively resources developed by other organisations will be incorporated.
Users can easily browse the Hub’s content or utilise a powerful search engine to find specific information. The search function allows users to search by keyword, area of work, and type of resource, with all filters fully interoperable.
We want to acknowledge the dedication of the ERN patient representatives and project managers who played a vital role in the development of this Hub. Their insights and dedication have been instrumental in creating a resource that will empower patient representatives and medical professionals to collaborate more effectively within healthcare networks.
Nora Lazaro, ERN and Healthcare Patient Engagement Manager
Join our demo on 15 November
In addition, a 30-minute demonstration webinar will be held on 15 November to provide users with an overview of the Hub’s features and functionalities. Interested participants can register for the webinar now.
The launch of the Patient Partnership Hub marks a pivotal moment in the ongoing efforts to enhance patient partnership in healthcare networks and similar initiatives.
Only through well-designed, systematic and routine patient-clinician collaboration in these networks, as well as at hospital service level, will healthcare services effectively address the needs of people living with a rare or complex condition.
| Funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or HaDEA. Neither the European Union nor the granting authority can be held responsible for them. |
| This project has been made possible in part by a grant from the Chan Zuckerberg Initiative DAF, an advised fund of Silicon Valley Community Foundation. |
For more information and to access the Patient Partnership Hub, visit https://www.eurordis.org/patient-partnership-hub/.
Julien Poulain, Communications Manager