Dystonia Europe is a member of European Patient Forum (EPF) and participated at the leadership meeting 13 April and at the Annual General Assembly 14 April in Brussel.
The leadership meeting started with opening remarks by Marco Greco, EPF President.
Patient organisations face a new environment with AI (Artificial Intelligence) and it is essential with boundaries regarding ethics. Ownership of data needs to be established and patients and patients organisations need to be updated and be part of the process of AI being implemented within healthcare. The necessity of patients to be involved is to take care of the needs of the patient.
Ildik Vajda, senior policy officer in Digital Health at Patiëntenfederatie Nederland, held a presentation on 101 AI and Data Saves Lives. This presentation gave us a little insight in how complicated AI is and stated that it is a new system technology and the algorithm needs to be error free. Models can be very complex and maintenance of the program is necessary. There is a lot of work behind the scene.
Antonio Andreu, Scientific Director in EATRIS (European Infrastructure for Translational Medicine) spoke about AI in the medical and research area and how to ensure that the data respect the patient. There is a shortage of health care professionals and it can be a tool to assist in diagnosing and treatment of patients.
We need to not be afraid of using AI but to be alert so it is in the best interest of patients. AI is already used widely in the health care systems today. Examples are robotics surgery with supervision from the surgeon and AI can assist to help diagnose the severity of a stroke, which again will determine which treatment is best for the patient.
The AGM was held 14 April in the morning and in the afternoon. EPF closed the AGM (Annual General Assembly) with a presentation from Claudia Louati, EPF Head of Policy on our #Vote4Patients campaign!
To achieve truly equitable and participatory healthcare, what matters the most is the involvement of patients. Without their first-hand knowledge, no health policy can be satisfying and representative of the needs of the community we represent at EPF.
In the EPF Patient Organisations’ Manifesto, there are defined 10 principles to guide policymakers in better engaging with organisations advocating for patient rights. Take a moment to go through them and sign the EPF petition – check out the links below!
Sign the petition: https://bit.ly/3uyqDo4
Read EPF’s Manifesto: https://bit.ly/3HHUm0U
