Patient Organisation Cooperation – AIPM Leads Pioneering International Initiative

Patient Organisation Cooperation – AIPM Leads Pioneering International Initiative

Moreover, the initiative aims to promote the involvement of patients in the entire life cycle of medicines from the research and development phase through the processes of the healthcare system to long-term pharmacovigilance issuesThe international workshop, held as a first step in the initiative, was attended by around 130 interested professionals from more than 20 countries.

Europe is facing significant healthcare challenges due to an ageing population and the increased prevalence of chronic diseases. In the past, academics, healthcare professionals, actors in the pharmaceutical industry, and regulators made independent decisions about patient care, medical research, health information and service design without the meaningful involvement of patients.

However, this practice is starting to change: the value of working together with patients and patient organizations is increasingly recognized throughout the healing process. In cooperation with the European Federation of Pharmaceutical Industries and Associations (EFPIA), and supported by the IMI (Innovative Medicines Initiative) operating within the framework of the European Patients’ Forum (EPF) and the European Commission, the Association of Innovative Pharmaceutical Manufacturers has launched an international initiative to promote these changes that are still in the early stages in the Central and Eastern European region. The aim of the pioneering initiative is to start the development of patient organisation cooperation in our region as well.

As a first step of this initiative, the IMI’s PARADIGM Project brought large-scale international online workshops to the region on the 12th of May, which were attended by around 130 professionals from more than 20 countries representing patient organisations, decision makers, regulators and the innovative pharmaceutical industry. The PARADIGM develops tools in the European Union, which facilitate patient participation in the whole pharmaceutical research and development process. Through the event organized by the AIPM with the purpose of creating tradition, it is now possible for professionals in the region to also be actively involved in their development and customization, and to support the development of sustainable patient co-operation in Central and Eastern Europe as much as possible.

The current workshops covered the following topics:

The development of a roadmap to make the patient engagement ecosystem sustainable

Practical recommendations for the realistic implementation of patient engagement

The development of a monitoring and evaluating framework to assess patient engagement

Dr. Gergely Jandrasits, the AIPM’s alliance manager highlighted in connection with the initiative: “We have taken the first steps and I am confident that we will soon be able to make concrete proposals and recommendations for the cooperation of healthcare actors with patients and patient organisations, as this creates value from which all parties can clearly benefit. Our goal is to raise awareness of the importance of developing patient collaboration in the region and to organize the first forum specifically focusing on this issue, which can benefit patients and healthcare systems.”

As a next step of the initiative, following the coronavirus pandemic, the Association of Innovative Pharmaceutical Manufacturers plans to hold a regional conference in which, in addition to a high-level discussion on the topic and opportunities for progress, the experiences of the workshops held on Tuesday, as well as the specific recommendations made on the basis of them, will be presented.


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