The ESOT-ETPO alliance

The ESOT-ETPO alliance

The ESOT-ETPO (European Transplant Patient Organisations) alliance is a collaborative entity established by the European Society for Organ Transplantation (ESOT) and Transplant Patient Organisations that aims to bring together healthcare professionals and people with transplants.

Mission

The mission of the ESOT-ETPO alliance is to promote realistic medicine in organ donation and transplantation. The alliance aims to achieve this by empowering people with transplants, encouraging and facilitating a meaningful dialogue between patients, organ donors and their families, caregivers and transplant professionals to ensure that their views and experiences are represented.

Core principles

The following core principles inform the alliance and its activities:

1. Transplant care should be holistic and person-centred.
2. People with transplants should participate as equals in healthcare decisions and in the development of guidelines and policies that concern them.
3. The knowledge and experience that people with transplants have of their own health can complement that of healthcare professionals.
4. People with transplants should be involved in activities aimed at the education of fellow patients, organ donors and their families, caregivers, and transplant professionals.
5. Information and data should be transparent, accessible, and easily available to the patient community.

Objectives

The members of the ESOT-ETPO alliance shall focus their efforts on the following:

• Create an open and trusting environment that facilitates meaningful conversations between people with transplants and transplant professionals.
• Reduce unwarranted variation in healthcare and improve outcomes throughout Europe.
• Bring added value to the health and quality of life of the transplant population.
• Implement realistic medicine by ensuring that people with transplants are equal partners in the decision-making process through the appropriate provision of information and consideration of available treatment choices. In this sense, informed consent should be understood as an ongoing, dynamic process, commencing as early as possible in the transplant journey.
• Acknowledge that person-centred care and self-management support are essential to successful transplant care, and that digital solutions that enhance these aspects safely, should be developed and promoted.
• Ensure that research findings and data regarding health-related quality of life, self-management, adaptation, and everyday life issues are rapidly disseminated to people with transplants in a transparent and easily accessible way, for example by promoting and stimulating open-access publications and open events.
• Create partnerships with patient organisations to promote a healthy lifestyle in transplant recipients.

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