For patients
OPTIMA’s vision
Every patient should have access to the most up-to-date treatments and therapies, that are tailored to them.
We want to transform cancer care in Europe by giving patients and their healthcare providers the tools to make decisions together. By using new computer technologies, we will make clinical information more accessible. We will combine information from different clinical guidelines (guidance given to healthcare professionals about the best way to diagnose and treat people living with disease) in these tools to personalise treatment for each patient and their needs. Using these tools, patients and healthcare professionals can make better decisions together.
What OPTIMA is aiming for?
We aim to create a central database with access to data from all over Europe. This is because, easy access to a large amount of health information can help answer important questions about prostate, breast and lung cancer. This will deepen our knowledge about issues that are not covered by clinical guidelines or do not have strong evidence to support the guidance.
We will also create a support tool that will fill in the gaps in the guidelines to help patients and healthcare professionals to make decisions. The support tool will be based on national and international guidelines and will be updated regularly.
Which challenges
is OPTIMA addressing?
Challenges for patients
Diagnosis and treatment methods are constantly developing, but with this, the choice of how to diagnose and treat can become more complicated. This can make it difficult for patients to understand their options and make it harder to come to a joint decision with their healthcare professional.
Challenges for clinicians
The large amount of rapidly changing information on new diagnostic tests, treatments and guidelines poses a challenge for healthcare professionals when deciding the best treatment for their patients.
Challenges for pharmaceutical companies & regulators
Pharmaceutical companies and regulators need to understand real-world treatment outcomes of new drugs outside of the research environment. This has become a vital part of drug development, regulatory approval and making drugs available to consumers.
Challenges for healthcare payers (people or organisations that pay for healthcare that are not patients, such as national health services or insurers)
There is a lack of reliable, real-world (not in a clinical trial) evidence about the safety and effectiveness of treatments. This makes it difficult for healthcare payers to make quick decisions and manage their resources.
Challenges for healthcare ecosystems
The healthcare ecosystem includes patients and their healthcare teams along with all other groups that make up the full healthcare system. Recently the way healthcare systems operate has shifted from organisation-focused to patient-focused healthcare. This means that patients are now more involved in their diagnosis and treatment. This is especially true with more access to digital healthcare and has meant that systems need to adapt to keep up.
Principles & key objectives of OPTIMA
Availability to all relevant stakeholders
We will create a catalogue of data by gathering real-world datasets from European electronic health records (EHR) and other types of real-world data.
Trust and acceptability to stakeholders such as healthcare professionals and patients
We will develop a guideline decision-support toolset that will be regularly updated for the three priority conditions: prostate, breast, and lung cancer.
Real added value for all stakeholders
- We will use advanced methods such as artificial intelligence (AI) to improve our knowledge.
- We will ensure the platforms we develop will be long-lasting by supporting business models based on paying users.
Sustainability after the project
We will develop a secure, sustainable and valuable platform. It will be a central host for management tools, learning tools, AI systems and guideline-based decision support tools.
Availability to all relevant stakeholders
Real added value for all stakeholders
We will ensure the platforms we develop will be long-lasting by supporting business models based on paying users.
Sustainability after the project
Trust & acceptability to stakeholders such as healthcare professionals & patients
The OPTIMA Public/Patient Advisory Board
ELF has established a Public/Patient Advisory Board (PPAB) for OPTIMA.
The Public/Patient Advisory Board will be involved in:
- Providing feedback and suggestions during all aspects of the project’s journey
- Activities that impact communities of people living with lung, breast and prostate cancer
- Helping to create education material aimed at communities affected by lung, breast and prostate cancer and those who could be affected in the future
- Helping to disseminate the outcomes of the project.
The PPAB will meet online a minimum of three times per year.
Members’ Videos
The members of the PPAB attend the yearly General Assembly meetings of the project to contribute to the project with inputs and suggestions and to remind researchers to never forget about the patients’ side.
At the last meeting in Barcelona in May 23, we took the chance to interview them and to ask them about their motivation to join the OPTIMA Public/Patient Advisory Board, their cancer journey, and their vision for future patients.
The Public/Patient Advisory Board
The ultimate goal of OPTIMA is to find better, more personalised treatment options for patients and to ensure that they have a good quality of life. Listen to four members of the OPTIMA Public/Patient Advisory Board on their involvement in patient advocacy organisations, their cancer journeys and their hopes for future patients.
Conchi Biurrun, Spanish Breast Cancer Federation of Associations
Conchi Biurrun from the Spanish Breast Cancer Federation of Associations and member of the OPTIMA Public/Patient Advisory Board speaks about her journey as a patient with breast cancer, her involvement in the OPTIMA project and her hopes that this project will lead to better, more personalised treatment options and a better quality of life for patients.
Erik Briers, European Prostate Cancer Coalition
Erik Briers from the European Prostate Cancer Coalition and member of the OPTIMA Patient and Public Advisory Board talks about his cancer journey and how a project such as OPTIMA can help other patients to receive optimal treatment with the help of real-life evidence and guidelines.
Seamus Cotter, Irish Lung Cancer Community
Listen to Seamus Cotter from the Irish Lung Cancer Community and member of the OPTIMA Patient and Public Advisory Board on his experiences with clinical trials and the importance of giving clear information on specific treatments to patients for an informed decision.
Marjo Forsblom, Lung Cancer Europe
Marjo Forsblom from Lung Cancer Europe was a member of the OPTIMA Public/Patient Advisory Board. In this video, she explained how OPTIMA will be putting health data to good use and aims to to develop a tool that knows what’s best for a patient in a specific situation. Sadly, she passed away in October 2023. With her familiy’s blessing, we decided to keep her video here. She will be very much missed by her OPTIMA friends and colleagues.
Marzia Zambon, EUROPA DONNA
Marzia Zambon is member of the OPTIMA Public/Patient Advisory Board and Executive Director of EUROPA DONNA, the European Breast Cancer Coalition. In her role, she is responsible for all EUROPA DONNA advocacy initiatives in the areas of information, education and lobbying, mainly within the European Institutions and the OECD. She is also representing EUROPA DONNA in a multitude of high-level scientific committees and in large international research cooperations. In OPTIMA, she is making sure that the patient’s voices are heard and that the results bring a real added value to the patient community.
Ximena Montano, EUROPA DONNA
Ximena Montano is a member of the OPTIMA Public/Patient Advisory Board and Board Member of EUROPA DONNA, the European Breast Cancer Coalition. Given her cancer research background she is involved with EUROPA DONNA advocacy regarding research, education and lobbying within European and other international institutions. She is representing EUROPA DONNA in international scientific committees and is maintaining key research collaborations. In OPTIMA, she is providing the patients views so that the outcomes are beneficial to the patient community as a whole.
