EFA co-chaired with the European Commission a session in the 2nd Annual forum of the Horizon 2020 Scientific Panel for Health, organized by the European Commission DG Research together with the Scientific Panel for Health (SPH) in which EFA’s Susanna Palkonen is the patient representative. The conference addressed the participation of society in health research and policy, and the synergies between health research and health care. This is of course one of EFA’s priorities, meaningful participation of people with allergy, asthma and COPD and their representative organizations.
This year, the second edition was built under the framework of “Health research in a connected and participative Society”, addressing the participation of society, patients at the forefront in health research and policy, and the synergies between health research and health care. Representatives from different organizations all around Europe assisted to the different panel discussions, divided into expectations and participation of society and building on the potential for research within and for healthcare.
An evident gap on research investment
As a recurrent topic, the first thing that came up was the lack of investment. Manuel Heitor, Ministry of Science, Technology and Higher Education of Portugal and Valentin Fuster, representing National Center for cardiovascular research Carlos III (CNIC) in Spain, compared the low investment on research in Europe to the one in the United States and described it as an “evident gap” that will require lot of work to reduce. In this sense, Krzysztof Klincewicz representing University of Warsaw highlighted the fact that European investments are mostly concentrated in central Europe, putting aside the investment on other regoins, and pointed out Portugal and Poland as examples.
Not only involving but engaging patients
The key issue about participation of patients came up with the intervention of Barbara Prainsack, representing King’s College London, who focused on the problem of real access and how to coordinate to create synergies between participation and patient-centered medicines. “It is not only about involvement but also about engagement”, noted Susanna Palkonen, EFA director in her summary as co-chair of the session.
“The problem is that research focus only in the disease, forgetting the person” explained, Petra Wilson, from HealthConnect. To her, co-creation between research and patients can lead to the evaluation of some treatments and, therefore, bring those treatments to development. That is why, Tamas Bereczky from European Patients' Academy (EUPATI) and Alex Eggermont, from Institute Gustave Roussy stressed the need of patient’s involvement from the very beginning towards to have a real objective and transform the patients as the driver of the research.
The idea of collaboration is shared by the Academic point of view. Bernard Charpentier, representing the Federation of European Academies of Medicine (FEAM), stressed how work at national level is not sufficient anymore and suggested the role of the academies, which have the capacity to redirect research and also may have political implication. But Stephen Holgate, from the University of Southampton, agreed in the need of more investments in this field and also the importance of an independent research.
Effective use of existing data
Data use is a recurrent subject nowadays. Mrs Prainsack highlighted the patient capacity to create knowledge and relevant data, which can lead to individual empowerment, nowadays a potential still unused as it is to discover a way on how to use it without attacking privacy. As a possible approach, Alex Eggermont, suggested data to be shared in a common diagnostic platform tool and about this, Dr. Lacombe, from EORTC shared his experience with SPECTA platform Network infrastructure, which has a long tradition of cancer treatment monitoring and data digitalization and sharing. At European level, the critical point remains the infrastructures that connect data: how technology, legal framework and data governance work together.
The conclusion of this Second Annual forum of the Scientific Panel for Health was shared agreement on the need for a more inclusive approach to health research involving citizens, policy and the better use of digital innovation in health care.
See more news about our role in the Scientific Panel for Health