Promoting risk-reduction interventions in Rare Tumour Risk Syndromes – The PREVENTABLE project kicks off

17 March 2023

We are pleased to announce the launch of a new EU-funded project, Cancer prevention vs cancer treatment: the rare tumour risk syndromes battle – PREVENTABLE. The project will merge specialised clinical knowledge on Rare Tumour Risk Syndromes (RTRS) pathways of care, real-life experiences from professionals and patients, and health economic models to estimate the cost-benefit of risk-reduction interventions in RTRS. PREVENTABLE will assess the clinical, social and financial impact of applying multidisciplinary and specialised care to prevent advanced disease in patients suffering from RTRS.

RTRS are rare diseases affecting 5 in 10.000 people or less that genetically predispose individuals to the development of various cancers across their lifetime. It constitutes a fraction of heritable cancers which are rare, neglected, and need specialised care. These cancers differ in type, affected-organ, age of onset, recurrence, and gender-specificity. Provided that RTRS patients survived early onset cancers and reach reproductive age, they have a 50% chance of transmitting the disease to their offspring. From a clinical standpoint, RTRS provide a unique and powerful context for cancer prevention, early diagnosis, and treatment. The genetic diagnosis is made in cancer-free individuals and provides the opportunity to perform intensive surveillance and risk-reduction strategies. The identification of asymptomatic RTRS patients can increase targeted treatments and reduce future hospitalisation, which is the largest fraction of healthcare spending.

The project will provide evidence supporting that healthcare costs decrease when RTRS asymptomatic carriers are actively identified and provided with intensive surveillance and risk-reduction treatments of cancer-prone organs. This will reduce the number of patients developing advanced disease and improve clinical outcomes. Also, the aim is to demonstrate that active prevention in RTRS decreases the need of treating acutely sick patients. PREVENTABLE will reveal a window of opportunity for effective cancer prevention or early disease treatment in RTRS in asymptomatic carriers, and associated savings. Ultimately, the achievement of the project will translate into better care of patients and families affected by RTRS and quality of life improvement.

EHMA is a consortium partner in this project, leading the efforts to make RTRS visible to relevant stakeholders including healthcare professionals, healthcare providers, pharmaceutical industries, insurances, civil societies organisations, policy-makers, and academia. Further, we will conduct a SWOT analysis on the implementation of RTRS care pathways and establish a Stakeholder Group on health financing models. Finally, with the final evidence at hand, we will raise awareness among policy-makers and health insurers about the cost-effectiveness of RTRS prevention vs treatment.

LEARN MORE ABOUT THIS PROJECT
Funded by the European Union.  Views and opinions expressed are however those of the author(s) only and do not reflect those of the European Union or HaDEA. Neither the European Union nor HaDEA can be held responsible for them.

Share

Recent News

What our Members say

I have been active in EHMA since the first years of the '90s and I have seen its evolution from a small association of members interested in sharing knowledge on health management practices to the current status of reference and advisory key player for EU, health systems and organisations, stakeholders associations, industry and universities. EHMA is now a unique knowledge hub, policy advisor, community of practice and network of best in class organisations involved in health policy and management. A place where health managers can build their competences, policy-makers and stakeholder associations envision how to implement and sustain change through health management, industry leaders understand how to engage more effectively with health organisations and systems. The right place to nurture and grow health management capabilities and capacity for every stakeholder of health systems.

Prof. Federico Lega, University of Milan, Italy

Health management has a crucial function in shaping public health and health system challenges. The Medical University of Varna, Bulgaria had success in collaborating with EHMA on EU-funded projects that has resourced us to create new health management competencies for the future workforce. In addition to all classical definitions, health management is a science dealing with individuals, groups, and society at large. It is an art contributing to the beauty of our lives and an interactive communication process at all levels of institutions and human energy. I have also had the pleasure to chair the South Eastern European Special Interest Group which gives members a space to discuss and tools to address how health systems are managed in our regions.

Prof. Todorka Kostadinova, Medical University of Varna, Bulgaria

I enjoy the high level of interaction and engagement in EHMA’s activities, in particular during the annual conference where the panel discussions are rich and well prepared. As a hospital manager and professor of health management, EHMA motivates and inspires me to be creative. You go back home feeling energised from seeing old friends and making new connections, as well as being convinced of serving as EHMA’s ambassador. It’s a strong feeling of interdisciplinary engagement, but it also feels like being part of family-like community.

Prof. Sandra C. Buttigieg, University of Malta, Malta

EHMA is a pre-eminent organisation for everyone working in planning, managing and delivering health services across Europe. As a long standing member of EHMA I have always been impressed by the vibrant community of managers, researchers and academics it has created and by the many opportunities for sharing knowledge and funding opportunities it has brought to its members. Its international scope is impressive and its impact is often felt in management and research across European and national health systems.

Prof. Axel Kaehne, Edge Hill University, UK

Health workforce has become more essential in operating, managing and maintaining health systems lately, particularly in crisis and emergency situations. European healthcare professions and the workforce need to be high on the agenda of managers and decision makers. The Health Services Management Training Centre, Semmelweis University in Hungary is a longstanding EHMA member, because it connects us with collaborators and experts, with whom we can have complex debates, from whom we can learn and at the end find solutions in various challenging fields of healthcare management.

Dr Eszter Kovács, Health Services Management Training Centre, Semmelweis University, Hungary

As a hospital administrator and health management professor, I see on a daily basis that the healthcare challenges require talented and skilled managers to transform it. the EHMA membership has been beneficial to bring healthcare management research and education to the demanding healthcare services world, promoting healthcare management competencies and knowledge creation.

Dr Alexandre Lourenco, APAH - Association of Portuguese Hospital Managers, Portugal

Many healthcare systems in Europe and beyond are facing similar challenges which require innovative and creative solutions. EHMA’s annual conference, webinars, Programme Directors’ group and other activities and resources provide incredible opportunities for networking, connecting and sharing experiences. A distinct feature of EHMA is the diversity of members with representation from many countries, sectors and different communities of practice – academic, policy-makers, practitioners, managers, leaders and students. The annual conference is a highlight in the calendar year, offering a friendly, fun and learningful environment for emerging and established members to engage, collaborate and meet up with old and new friends. I am proud to be a member of the EHMA Board.

Prof. Ann Mahon, University of Manchester, UK

Society evolution, pandemics and ageing modify health needs. So, health policies and services are to change dramatically. EHMA, through webinars, workshops and annual conference provides an excellent insight to a professional changing world, favouring closeness to management innovation and the protagonists of these changes. As a primary care services’ manager, participating in EHMA activities is really worth it and allows to involve oneself in the innovation processes.

Dr Antoni Peris Grao, Consorci Castelldefels Agents de Salut (CASAP), Spain