After decades of scientific efforts, the search for successful treatments of many cancers and most metastatic disease, Alzheimer's and other incapacitating and/or deadly conditions sometimes seems to have hit a wall. The time has come to include a new perspective into the equation: the patient perspective, a unique insight that may help bring those walls tumbling down.
Why? No one knows better what it means to experience a disease than those who live with it, and a true multidisciplinary approach to tackle disease must not only have patients at its center, but also partner with them across the research process, from basic science to clinical studies. The challenge now is for both patients and researchers to team up for greater impact.
In Europe, policy-makers are already investing in creating an environment where these partnerships can thrive. The Trio Presidency of the Council of the European Union, which sets the political agenda, has co-signed the Declaration on effective cancer research "Europe: Unite against Cancer", which explicitly commits to support patient engagement in cancer research (see below).
A joint national and international online forum on June 23rd will look at how partnerships between patients and scientists can help ask better questions, improve research designs and increase the translation of research findings into the clinic. This original online forum, driven by both patient organizations and academic research institutes, is the first of a series of events that mark the beginning of a new era in medical research.
Portuguese session, 10-11:30am (GMT+2/ Brussels):
A first focus on the situation in Portugal will bring together patient representatives and scientists, among other healthcare stakeholders, to identify good practices and challenges for more effective research. A roundtable of people leading successful partnerships will illustrate and discuss how patients have been involved in research, contributing an essential perspective for increased impact of scientific results.
International session, 12-1:30pm (GMT+2/ Brussels), in English:
Experience-based insights will be presented by pioneers Jan Geissler, chair of the Workgroup of European Cancer Patient Advocacy Networks (WECAN), and Bettina Ryll, founder of Melanoma Patient Network Europe (MPNE) and member of the Horizon Europe Cancer Mission Board. Also during this session, a roadmap for patient participation in research in Europe will also be discussed, with the presence of participants and officials from Germany, Portugal and Slovenia, the countries that currently compose the Trio Presidency of the Council of the EU. This Global session will be closed by Prof. Dr. Manuel Heitor, the Portuguese Minister of Science, Technology and Higher Education.
The event is a partnership between Portuguese Patient organizations and networks such as the European Patients' Academy on Therapeutic Innovation (EUPATI), Plataforma Saúde em Diálogo, EVITA Cancro, the Portuguese Multiple Sclerosis Society, with the Portuguese National School of Public Health and the Champalimaud Foundation/UM Cure 2020 European Consortium.
The initiative is also a response to the challenge made by patient advocates from the Melanoma Patient Network Europe and the Workgroup of European Cancer Patient Advocacy Networks (WECAN) in the context of recent advances in Europe, and aims to promote a joint and constructive reflection on the different opportunities for the involvement of patients in research.