The Matchmaking Platform for Patient Involvement in Research is an innovative initiative to enhance the integration of patient perspectives in research. It aims to design, develop and implement an automated matchmaking platform “Symmetrian” that can accurately connect relevant research activities with suitable patient experts. Coordinated by EPAI, a patient-led consortium supported by the Acute Leukaemia Advocates Network (ALAN), Childhood Cancer International – Europe (CCI), Myeloma Patients Europe (MPE) and Patvocates, oversees the whole development process and ensures patient insights are integrated into every stage.
This platform addresses the need to accurately and systematically connect researchers in academia, regulatory bodies and industry with knowledgeable patient and carer partners with the required community insights, expertise and patient experience. Existing patient expert databases and matchmaking services face challenges such as limited accessibility, list of patient experts with specific background, disease or educational degree, outdated information, and lack of patient community involvement in database management.
Symmetrian aims to overcome these challenges by offering a unified, patient-led, and accessible solution that enhances connections between knowledgeable patients, carers, and
researchers across a broader range of conditions. Its initial phase will target the cancer area, with a further phase to implement expansion to other diseases.
Symmetrian, as an algorithm-based software tool will feature a user-friendly interface, making it easy for both patients and researchers to navigate. An advanced matching algorithm will ensure accurate and efficient connections between patient experts and research initiatives. Robust data protection policies will be implemented to safeguard user information, ensuring that all data is managed securely and in compliance with relevant regulations. This approach enriches ongoing research and makes it more relevant and impactful for those it aims to benefit.
3-year Project
Multi-Disease Focus
WHO European Region
Innovative Patient Expert-Research Matchmaking
Objectives
The primary objectives of this project are to empower the patient community and improve research outcomes by providing a structured and accessible means for patient engagement in research. This is achieved by developing an algorithm-based software tool that supports accurate and structured patient involvement. The platform aims to streamline the identification of qualified patient experts, thereby promoting integration between researchers and patient communities and a collaborative environment where researchers can gain valuable insights into patient needs, experience and preferences. This mutual benefit aligns with the broader goal of improving healthcare outcomes through more inclusive and patient-centred research.
Project Goals
The project is structured around several key goals.
Technical Development
Design, develop and validate the first version of the matchmaking platform through a co-creation model that ensures end-user requirements are early adopted for optimal performance.
Community Integration
Foster a collaborative environment where researchers and patients can work together effectively.
Sustainability
Establish a subscription-based business model to ensure the platform’s long-term viability.
Timeline
Governance
The governance structure of the project involves several key players. EPAI will lead the management and coordination of the project, acting as the primary contact between the external IT provider and potential end users. EPAI does not do this alone but supported by a patient-led consortium established by the Acute Leukaemia Advocates Network (ALAN), Childhood Cancer International – Europe (CCI), Myeloma Patients Europe (MPE), and Patvocates. The technical development of the platform is outsourced to “Naru Intelligence”, a software company specialised in the biomedical field with expertise in software development and patient data management. An advisory body, consisting of patient experts, organisations, researchers, and other stakeholders, will provide continuous feedback throughout the development process.
Benefits
The platform offers numerous benefits for all stakeholders involved.
Patients
For Patients it provides direct influence on research, improved understanding, and increased trust in the research process.
Researchers
Researchers will gain valuable insights into patient needs, experience and preferences, leading to more patient-centred outcomes.
Healthcare sector
For the Healthcare sector it will enhance research impact and expand market reach by addressing patient needs.
Early patient involvement
Early patient involvement will optimize optimise research processes, reduce development failures, and shorten the time to market for better treatment options.
Now in development, the launch of Symmetrian is set by the end of 2025.
Open to Partnerships
The European Patient Advocacy Institute and the consortium partner organisations are inviting patient organisations, researchers, regulatory bodies, pharmaceutical companies and other stakeholders to join us in this initiative in the pilot phase and beyond. By working together, we can ensure that this platform addresses a critical gap in research, meets the needs of its users, and brings about meaningful change.
Contact Information
For more information or to get involved, please contact info@symmertrian.org
