Luxembourg launches a national survey of people with cancer with the aim of improving the quality of care

Luxembourg launches a national survey of people with cancer with the aim of improving the quality of care

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In collaboration with the Ministry of Health and as part of the national cancer plan, the Luxembourg Institute of Health has launched Colive Cancer, a national initiative through which people with cancer or who have suffered from the disease can share their experiences in order to improve the quality of care.

The Luxembourg Institute of Health (LIH) has announced the launch of Colive Cancer, a study which aims to improve the quality and efficiency of the national health system in the fight against cancer through direct interaction with patients through a online survey. Colive Cancer is led by Doctor Guy Fagherazzi of the Phenotyping Research Unit within the LIH Precision Medicine Department, in collaboration with the Ministry of Health as part of the National Cancer Plan 2 (PNC2), currently in courses from 2020 until 2022.

According to the National Cancer Registry and the European Cancer Information System, around 3,000 new cases of cancer are diagnosed each year in Luxembourg and 1,100 people succumb to the disease, around a quarter of the annual deaths in the whole country. Cancer is the leading cause of death in men and the second in women. Currently, the number of people living with cancer in Luxembourg is estimated at around 18,000, i.e. nearly 3% of the population, which makes this disease a priority for the Ministry of Health and biomedical research in Luxembourg.

The PNC2 is a continuation of the National Cancer Plan launched by the Ministry of Health in 2014. Since 2020, this second phase of the plan has focused on translational oncology and the digitization of data. In addition, it seeks to promote collaboration with patients, taking their feedback into greater consideration in order to improve the diagnosis and treatment of cancer in Luxembourg.

Colive Cancer is an online survey accessible via smartphone or computer that offers participants the opportunity to share their opinion of the current health system in relation to the treatments they have received and their quality of life in general. The survey is divided into several modules and is available in four languages: English, French, German and Portuguese. Participation is limited to people over the age of 18, including people currently being treated or having been treated for cancer within the last 5 years.

Participants will be asked to provide details about their diagnosis and treatment, and will be able to share the care and support they received and their overall experience. Former patients will also be invited to give their feedback on post-cancer care and their life after the disease. Finally, Colive Cancer will provide participants with useful information about the diet to follow when you have cancer, the physical activity to practice, psychological support and many others.

All data will be treated as strictly confidential. Personal data will be pseudonymised via a confidential reference code, and all data will be stored at LIH in secure servers.

“This project represents a unique opportunity to improve the cancer health system in Luxembourg, precisely thanks to the direct contributions of patients! This patient-centered approach will allow us for the first time in Luxembourg to identify what works and, much more important, which deserves to be improved within the framework of the National Cancer Plan,” said Dr. Guy Fagherazzi, project manager.

Colive Cancer is currently welcoming participants on its official website.

Funding and collaborations

Colive Cancer is a national survey conducted by the Luxembourg Institute of Health (LIH) under the aegis of the Government of Luxembourg via the Plan National Cancer 2.

About the Luxembourg Institute of Health (LIH)

The Luxembourg Institute of Health (LIH) is a public biomedical research institute focused on precision medicine. Its mission is to become a European reference in terms of scientific excellence and its use for patients.

The well-being of patients is at the heart of LIH’s activities. Driven by a collective obligation to society, LIH uses the knowledge and technological advances that arise from research based on patient data to have a direct impact on public health. Its dedicated teams of multidisciplinary researchers strive for excellence, accumulating relevant knowledge related to immune diseases and cancer.

The institute sees collaboration, new disruptive technologies and process innovations as unique opportunities to improve the application of diagnostics and therapeutic methods with the long-term goal of preventing disease.

About Research Luxembourg

Research Luxembourg is an agile team of thought leaders who seek to learn, explore and have an impact in building a better future. By connecting all actors in Luxembourg and abroad, Research Luxembourg aims to become a leader in research and innovation by focusing on 4 priority axes: (1) The transformation of the sectors of industry and services; (2) A personalized health system; (3) Sustainable and responsible development; (4) Education in the 21st century.

Research Luxembourg is a joint initiative of the main actors in terms of public research in Luxembourg, and benefits from the support of the Ministry of Higher Education and Research, including the Luxembourg Institute of Health (LIH); the Luxembourg Institute of Socio and Economic Research (LISER); the Luxembourg Institute of Science and Technology (LIST); the Luxembourg National Research Fund (FNR); of Luxinnovation and the University of Luxembourg (uni.lu).

About PNC2

Paulette Lenert, the Minister of Health, launched the second National Cancer Plan 2020-2024 during an online conference on December 11, 2020. During this conference, the actors of the National Cancer Plan 2020-2024 (NCP2 2020-2024) were able to present the different phases and actions of the PNC for the next 4 years. This new plan, which places the support provided to patients and the quality of care at the heart of its project, will be implemented under the sign of digitization with the priority of improving the flow of information and data between specialists and the various institutions. The National Cancer Plan, whose acronym is PNC2 2020-2024, follows on from the first National Cancer Plan (PNC) and consolidates its progress.

Communicated by the Ministry of Health and the Luxembourg Institute of Health (LIH)

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