A better approach to follow-up care
We spoke to Dr. Maria Torrente, who is the Coordinator of the project CLARIFY. CLARIFY aims to identify personalized risk factors that influence the patient’s outcome at the end of their oncological treatment. The CLARIFY Platform, has been developed to allow healthcare professionals to understand, work with, and make decisions based on real data analysis from patients.
Diagnosis and treatment of cancer
have seen great advancements in recent decades. More than half of adult patients who suffer from cancer will live at least 5 years in the US and Europe. This has created a new challenge for healthcare providers - ensuring the long-term quality of life and well-being of cancer survivors following their oncological treatment. The EU-funded CLARIFY project is addressing this challenge. CLARIFY focuses on collecting and analyzing clinical, genomic, and behavioral data from survivors of three specific types of cancer: breast, lung, and lymphoma. Using the power of big data and artificial intelligence techniques, CLARIFY integrates data with relevant publicly available biomedical information and data gathered from wearable devices used by patients post-treatment. By analyzing this abundance of information, the project aims to predict the patient-specific risks of developing secondary effects and toxicities resulting from their cancer treatments and identify patients who are at the highest risk of psychosocial dysfunction. The goal of the CLARIFY project is to transform cancer survivors’ care by providing enhanced, personalized treatment options. The project seeks to empower healthcare professionals with valuable insights into individual patient risks. This knowledge will enable them to deliver better-tailored care, leading to improved quality of life and overall well-being for cancer survivors.
In recent years, the number of cancer survivors has notably increased thanks to remarkable advancements in cancer diagnosis and treatment. However, the challenge of ensuring a high quality of life for cancer long-survivors following the posttreatment phase persists. One of the issues that clinicians face is the lack of adequate follow-up models. The current follow-up models have not progressed at the same pace as the advancements in treatment effectiveness. Clinicians have to rely on expert consensus rather than evidencebased guidelines. The primary focus in the current healthcare model is placed on the management of treatment toxicities, rather than the long-term secondary effects after treatment. However, cancer survivors face various unmet physical, functional, and psychosocial needs that impact their overall quality of life and survival outcomes. Secondary effects include late toxicity, secondary tumors, psychological dysfunction (e.g., anxiety and depression), and physical morbidity. Social problems that are often encountered include adaptation to life after cancer, unemployment, inequities by sex, lifestyle, and prevention, and toxic habits. All of these factors have an impact on the disease process. Therefore, it is necessary to take mental health, quality of life, and activity data into account when the goal is improving the patient’s well-being and the disease outcome.
CLARIFY Digital Decision Support Platform
CLARIFY aims to improve the well-being and quality of life of cancer survivors through early identification and discovery of risk factors that may deteriorate a cancer survivor’s condition after the end of treatment. The CLARIFY Platform stratifies survivors based on risk allowing clinicians to design personalized followup and supportive care protocols.
This is achieved through collecting and analyzing anonymized clinical and genomic data, data from wearable devices (circadian rhythm, physical activity), and electronic quality-of-life surveys.
This information is integrated with existing biomedical knowledge from public repositories and biomedical literature. To analyze the vast and diverse data, CLARIFY employs state-of-theart predictive models and biomedical knowledge graphs. The findings are then incorporated into the CLARIFY Digital Decision Support Platform (DDSP), a clinical decision support system.
“With the CLARIFY Platform we can analyze our patients’ data in real-time,” says Dr. Maria Torrente. The CLARIFY Platform has the ability to extract and present information from various data sources in a clear and organized manner. It ensures that the information is easily readable and structured. The clinician can choose to analyze the entire patient population or focus on an individual patient. Through the Platform, the clinician can also obtain the patient’s profiling and risk stratification, which will identify factors
for poor prognosis. The goal is to improve patient care efficiency and personalize the approach, supporting the complex clinical decision-making process with scientific evidence. “The CLARIFY Platform is a tool to be used by clinicians and that was our main challenge: to have two different communities, clinicians and knowledge discovery researchers, talk and work together. That´s our hardest task” states Prof Pedro Sousa. The CLARIFY Digital Decision Support Platform and the improved semi-automated annotation for analysis of circadian rhythms have been selected as KEY INNOVATIONS by the European Commission Innovation Radar. The Platform has been showcased at various events to the healthcare authorities and the pharmaceutical industry to discuss the opportunities it can offer to the public healthcare system and its potential to support oncological patients.
CLARIFY collaboration with patients associations
Patient education programs have demonstrated that enhancing patients’ understanding of their health issues positively affects patient health outcomes by improving compliance with treatments, alleviation of anxiety, and enabling patients and their families to be included actively in their care. In the CLARIFY research project, the Spanish Cancer Patients Association (GEPAC) and the Hospital Universitario Puerta de Hierro-Majadahonda (HUPHM) offer a Cancer Patients Education Program that empowers and supports patients in their own care. The contents of the program are based on CLARIFY´s results, HUPHM patient care expertise, and GEPAC´s experience to help patients. The aim is to help patients and their families navigate through the challenges of a cancer diagnosis and treatment, and easily transition into survivorship. The sessions provide participants with valuable skills, access to validated resources, and opportunities to connect with others. The program includes monthly sessions focused on supporting patients’ health and well-being as they transition from clinical treatment to recovery and wellness covering topics such as physical exercise, nutrition, employment protection & legal resources and emotional well-being. In this framework, several sexuality workshops have also been organized to address an important issue that directly affects the patient’s quality of life but still remains a taboo subject among cancer patients - alterations in sexual life. CLARIFY researchers did a study on the alterations in sexual function in long-cancer survivors based on quality-
of-life questionnaires. The results showed a high frequency of altered sexual function in surviving patients, and highly variable results in the degree of sexual satisfaction and the frequency of sexual activity, depending on the patient’s sex and type of neoplasm. Up to 36% of breast cancer patients reported alterations in their sexual life, 15% in lung cancer patients, and 10% in patients suffering from lymphoma.
“The evaluation of these alterations has helped us to incorporate them into clinical practice and develop both personalized and group-level interventions responding to the patient´s needs” explains Dr. Torrente.
CLARIFY is part of the “Cancer Survivorship – AI for Well-being” Cluster which consists of 11 EU-funded projects working in artificial intelligence for healthcare and well-being with the aim of transcending the individual project experiences. The activities organized, which encompass several Meeting of Minds, roundtable discussions, podcasts, a better practices guide, a common data space, and the White Paper itself, have proven a wonderful initiative to generate, activate and communicate knowledge and innovation in the areas of mental health, wellbeing, cancer recovery, patient support, and participatory research.
Consortia members
The innovative Platform has been developed by combining the expertise of partners from 5 different European countries. The consortium is composed of 12 partners: Hospital Puerta de Hierro-Servicio Madrileno de Salud (Spain); Universidad Politécnica de Madrid (Spain), Technische Informationsbibliothek -TIB(Germany), Holos Soluções Avançadas em Tecnologias de Informação, (Portugal); National University of Ireland (Ireland), University College London, (United Kingdom), University College Dublin (Ireland), Accenture Global Solutions (Ireland); Grupo Oncológico para el Tratamiento de las Enfermedades Linfoides-GOTEL- (Spain); Stelar Security Technology (Germany), Grupo Español de Investigación en Cáncer de PulmónGECP- (Spain); Kronohealth (Spain).
CLARIFY Cancer Long Survivor Artificial Intelligence Follow-up
Project Objectives
CLARIFY proposes to perform the integration and application of AI to facilitate the early discovery of risk factors that may deteriorate a cancer patient condition after end of treatment.
CLARIFY will analyse patient’s clinical, genomic, behavioural data and existing open data in order to determine a follow-up adapted to the individual needs of each group of. The development of a clinical-decision-support platform will allow clinicians to stratify patients by risk, design a patient-specific follow-up and supportive care protocol, and prevent these secondary effects and toxicities, which affect long cancer survivors’ wellbeing and quality of life.
Project Funding
The Clarify project has received funding from European Union’s Horizon2020 research and innovation programme under grant agreement number 875160.
Project Partners https://www.clarify2020.eu/about_us/
Contact Details
Érika Cerrolaza
Project Manager
Medical Oncology Department
Hospital Universitario Puerta de Hierro E: pm-clarify@idiphim.org W: https://www.clarify2020.eu
Dr. Mariano Provencio is Principal Investigator of the CLARIFY project. He is the Chief of the Medical Oncology Department at the Hospital Universitario Puerta de Hierro and a Full Professor of Medical Oncology at the Faculty of Medicine of the Autonomous University of Madrid. He is also the the President of the Spanish Lung Cancer Group and the Spanish Lymphoma Oncology Group and Academic Fellow at the Royal National Academy of Medicine. He has an extensive research activity with more than 200 studies focusing mainly on lung cancer and lymphoma.
“With the CLARIFY Platform we can analyze our patients’ data in real-time”