i3S launches pioneering digital platform on hereditary cancer
i3S has recently launched Learning Hub, a pioneering interactive digital platform at European level that promotes health literacy by providing educational resources on rare cancer risk syndromes — hereditary conditions that are largely unknown to the general public but have a profound impact on those who live with them. The platform was presented during the XXXIII Porto Cancer Meeting, held between 22 and 24 April, which brought together researchers, clinicians, patients and family members from several European countries.
Developed as part of the European PREVENTABLE project, funded with around five million euros by the European Commission’s Horizon Europe programme and coordinated by i3S researcher Carla Oliveira, the platform’s main aim is to “translate complex science into accessible language, enabling patients, families and healthcare professionals to better understand these diseases and make more informed decisions”.
At present, the platform brings together information on eight specific syndromes, presented in a variety of formats — documentaries on patients’ daily lives (Rare but not alone), animated videos explaining each syndrome in simple terms (Simply Rare), real-life testimonies following the journey from diagnosis to treatment (Clinical Stories), and a series of videocasts with specialists (Risky Talks).
These materials were produced by the Cancer Prevention Unit of Ipatimup, led by Nuno Teixeira Marcos, who was responsible for the design and production of the audiovisual and informational content that forms the backbone of the platform. The content was developed in collaboration with and with the participation of partners from the PREVENTABLE consortium, particularly nine reference centres from the European Reference Network ERN‑GENTURIS, which contributed clinical expertise, research data and experiences with and from patients across Europe. The technical development of the Learning Hub also benefitted from a central contribution by the Portuguese Innovation Agency (SPI), which was responsible for its implementation.
The XXXII Porto Cancer Meeting coincides with the closing event of PREVENTABLE, a consortium of 16 European partners whose aim was to assess the cost-effectiveness of preventive interventions by evaluating the clinical, social and economic impact of specialised care for individuals living with a high genetic risk of cancer.
This year, under the theme Bridging Research and Policy in Hereditary Cancer Prevention and Care, the Porto Cancer Meeting brings together researchers, clinicians, health managers and, for the first time, families from several European countries who have learned to live under the shadow of hereditary cancer. The objective, explains Carla Oliveira, “is to discuss the genetics of these cancers, their costs to society and new guidelines to improve communication among all stakeholders within the healthcare system”.
The Porto Cancer Meeting is an internationally recognised event historically organised by Ipatimup and, more recently, a flagship event of i3S. This year, Carla Oliveira emphasises that “the conference carries additional symbolic weight, as it is linked to the celebrations of the 10th anniversary of Portugal’s largest health research institute”. Ten years after its foundation, she adds, “i3S thus consolidates its vocation as a bridge between excellent research and society — this time in the form of a digital platform that can reach any European family with a screen and an internet connection”.
Saving lives and reducing costs in the National Health Service – Cancer debate
The event opened with a session on “Cancer: from research to health policy” and continued with a roundtable discussion dedicated to the theme “From health research to public policy: reducing the gap to improve hereditary cancer care”, which included the participation of the Executive Director of the NHS (SNS), Álvaro Santos Almeida.
Within the framework of the European PREVENTABLE project, explains Carla Oliveira, “it was possible to demonstrate, for the first time and based on clinical data, the advantages of early diagnosis and preventive action before the onset of disease, both for individual health and for a country’s economy”. As such, she adds, “the time has come to speak openly about what scientific advances allow us to do in the real world. We have an opportunity to improve healthcare and contribute to the sustainability of health systems if we better understand patients, the resources required for their clinical follow‑up, and the costs associated with prevention or disease treatment”.
