EFA representative Roberta Savli assisted to Alpbach Health Symposium “Leadership for patients’ involvement, Leadership for health – supporting transformational change for population health management” at Alpach, Austria on the 22 August.
The symposium pointed out the patients’ participation as crucial. In her presentation, Roberta stressed that certain conditions have to be put in place for real participation of patients. The first and most important is to invest in patient leaders. Roberta explained that we need to develop a regulatory framework that makes patient leader an integral part of formal and informal decision-making. EMA, the European Medicines Agency, for instance, involve patients in the Management Board and in scientific committees.
In the view of EFA, for patient leaders to make a meaningful contribution, they need to be involved in shaping, co-designing and leading proposals from the earliest stage. "We need to provide tailored, task-specific training and development of patient leaders", said Roberta.
As a best practice she mentionedhe European Patients’ Academy, EUPATI, that could be replicated in other regions. A private-public partnership, the project has already trained around 100 patient leaders on medicines development, clinical trials, medicines regulations, and health technology assessment. In addition, online modules can be used by a wider audience of patients.
But structured participation is not enough. It is necessary to build strong and meaningful relationships of respect and trust with patient leaders. As Roberta explained, sometimes patient leaders’ representativeness is challenged: patients are often asked what their legitimacy is. If they are simply patient advocates, they are challenged that they cannot speak on behalf of patients. If they are patients themselves, they are questioned whether they can actually speak on behalf of the patients’ community at-large or they are too influenced by their own condition and symptoms. As funding is limited, patients’ organisations often seek private financing (mostly from pharmaceutical companies) and this creates doubts on their independence. Doubts that can be cleared up by the development of a transparent framework of interaction with funding partners.
Lastly, Roberta addressed we need to ensure that patient leaders can easily access data that is robust, evidence-based and easy to understand and use.
See Roberta's full presentation here