With the rapid evolution of healthcare also the role of patients is changing and becoming more and more crucial. Valentina Strammiello, Director of Strategic Initiatives at the European Patients’ Forum (EPF), shared with Trendsanità an in-depth overview of how the organisation is changing the role from passive-patient to active-patient. The EPF, an umbrella organisation that in turn includes European and national patient organisations, is dedicated to promoting and giving patients a voice in healthcare decision-making processes.
Looking to the new Europe
In April 2023, the EPF presented for the first time its Manifesto for the patient movement in Europe, outlining the advocacy strategy that will cover the next decade. During the organisation’s 20th anniversary event, objectives and guidelines for active patient involvement in health policies were defined. Valentina Strammiello proudly stated to our microphones: «Active engagement, dialogue and patient involvement will be our guiding stars for the next decade. The patient must be involved at all levels of health policy».
During the last European elections, which saw the reconfirmation of Ursula von der Leyen as President of the European Commission, the #Vote4Patients campaign was launched to highlight and reiterate the EPF Manifesto. The campaign aims to promote a stronger and more participatory involvement of patient organisations in EU policy decisions.
«The aim of the campaign is to ensure that patients ‘voices are heard and respected during the new 2024-2029 mandate» says Strammiello, and in this regard he reminds that on 16 October 2024, in Brussels, the European Patients’ Forum will host an event entitled “Towards a patient-centred EU mandate: Health policy with and for patients”. This will be an opportunity to discuss and promote issues on patient engagement and their central role in European health policies.
The future of Patient Involvement
In the new millennium, communication strategies make it possible to reach an ever-wider audience and to actively involve citizens, and patients in this case, in political decisions. In this context, the EPF uses various communication and interaction tools with European institutions to promote patients’ priorities. «Patient involvement is recognised as essential and fundamental» says Strammiello, emphasising how this change represents a turning point in new awareness-raising and active participation campaigns.
In the past, through Joint Actions EPF played a crucial role in promoting patient involvement at the European level, ensuring that their voices were heard and integrated into decision-making processes. These transnational project collaborations have enabled the EPF to bring the patients’ perspective to key topics such as health technology assessment, chronic disease management, patient safety and the implementation of digital solutions in healthcare.
«It is a cultural change that we have been advocating for these years, not only for greater equity and transparency, but above all for the emergence of healthcare systems that are more responsible and accountable to patient needs» says an excited Strammiello.
Patient education and the future of European patients
«Patient education is one of the key points of our Manifesto. Health and digital literacy within patient communities is more necessary today than ever before» Strammiello says, linking to the innovative aspects of patient education that the EPF is pursuing. In collaboration with the Catholic University and other partners, EPF is supporting the Level II Master’s Degree in International Patient Advocacy Management, now in its second edition beginning in February 2024, with more than half of the places (18 of 30) open to patient representatives. «As EPF we are trying to build capacity and skills among patients to improve their involvement in the complex world of healthcare systems» Strammiello concludes.
With a programme that aims to train qualified patient advocates capable of navigating the complexities of the healthcare system and effectively representing patients’ interests, the shift from a passive to an active patient model becomes a concrete reality. This change represents a fundamental step towards a more inclusive, equitable and accountable healthcare system, where patients aren’t just recipients of care, but key players in the decision-making process itself.
