Patient engagement has become an essential requirement in research, yet researchers often struggle to find knowledgeable patient advocates, and patient organisations face challenges in connecting with research groups planning key projects in their areas. Patient involvement often does not happen in a timely or structured manner because researchers cannot find suitable patient partners that are available to collaborate in research, or patient advocates regularly hearing from applicant consortia at the last minute before submission of a research proposal. This highlights the ongoing need to accurately and systematically connect researchers in academia, regulatory bodies and industry with knowledgeable patient and carer partners with the required community insights and patient experience.
Following three years of groundwork, including the publication of strategic recommendations and a comprehensive landscape analysis, a matchmaking service between researchers and the patient community which covers different disease areas and countries and is accessible to all researchers was identified as a clear gap. Existing patient expert databases, patient and carer lists, patient expert databases and patient matchmaking services across Europe and the U.S. list competent patient experts with valuable insights, but are often only accessible to single institutions, only list patient experts with a specific background, disease or educational degree, or are not updated regularly and hence list patient experts which are no longer available to collaborate.
Most matchmaking databases also do not involve the patient community in database management and updates. Hence, there is a promising potential for a unified, patient-led, accessible matchmaking platform that can further enhance connections between knowledgeable patients, carers and academic and private researchers across a broader range of conditions and offer new functionalities that can ultimately improve the way patient involvement takes place.
To address this need, a patient-led project is developing an innovative Matchmaking Platform being designed through a co-creation process by a patient-led consortium coordinated by the European Patient Advocacy Institute (EPAI), with the support of the Acute Leukemia Advocates Network (ALAN), Childhood Cancer International – Europe (CCI), Myeloma Patients Europe (MPE) and Patvocates.
EPAI is grateful to have secured non-commercial funding from the German Federal Ministry of Education and Research (BMBF) and the Rising Tide Foundation for Clinical Cancer Research (RTFCCR) to address this unmet need and implement and run this project without commercial funding. According to the project’s development timeline, the platform’s pilot focusing on cancer and haematology will be launched by the end of 2025, with plans to expand into other disease areas in the near future.
A Strategic Approach to Patient Involvement
This Matchmaking Platform is the result of a strategic, patient-led initiative that seeks to solve a problem that needs long-term attention and can help to accelerate systematic change towards more meaningful, patient-centric research projects. It will allow researchers to efficiently find patient partners with the right expertise, experience and knowledge, while also giving patients and patient organisations a tool to connect effectively with researchers and regulatory bodies active in their respective disease areas. The Matchmaking Platform is being designed to ensure that patients are not only involved but are compensated fairly and engaged meaningfully throughout the research lifecycle.
Co-creation and Collaboration
The Matchmaking Platform will be a true co-creation effort, driven by the collaboration of key partners and stakeholders from the patient community, and open to any collaboration throughout the project’s lifetime. With funding from the German Federal Ministry of Education and Research (BMBF) within the framework of the German “National Decade Against Cancer” and the philanthropic Rising Tide Foundation for Clinical Cancer Research (RTFCCR) and guided by a consortium of patient-led partner organisations, EPAI is coordinating the technical development and running the implementation and operations of the platform, ensuring it meets the highest standards of accuracy, accessibility, privacy and security.
The consortium of partners will guide the platform’s development in order for it to reflect the diverse needs of patient organisations and researchers alike. The involvement of these patient organisations will keep the platform up to date, relevant, practical, sustainable and focused on ethical and effective patient involvement in research projects and regulatory affairs.
The non-profit, patient-led European Patient Advocacy Institute, committed to empowering the patient community and strengthening patient-centric research, views this initiative as a step forward in ensuring their voices are considered throughout the research process. It will streamline connections between researchers and patients, enabling secure and efficient collaborations at every stage of research.
“We want to make sure that all researchers, private and public, as well as regulatory institutions are able to identify and work with knowledgeable patient partners in their activities. The aim of our Matchmaking Platform is to positively make patient engagement in research quicker, more effective and more targeted, while deeply involving the patient community in designing and running the platform and supporting the patient partners in its database. By working collaboratively with our patient organisation partners and funders, we are confident that this Matchmaking Platform will play a pivotal role in creating more meaningful and patient-centred research by leveraging the best knowledge and minds of the patient community. This project is a testament to the commitment shown by leaders of the patient community, public bodies like BMBF and funding institutions like RTFCCR to addressing crucial patients’ unmet needs. We look forward to seeing the positive impact it will make for advancing research outcomes for different disease areas, as we expand the Matchmaking Platform’s implementation in the years ahead”, shared Jan Geissler, founder and managing director of the European Patient Advocacy Institute and Patvocates.
Key Features of the Matchmaking Platform
The Matchmaking Platform will be built with key features to drive structured patient involvement, including:
- Patient and Advocate Competency Matrix: A system that matches patients based on their expertise, considering the specifications of the request, ensuring they are well-suited to the needs of each research project, based on a competency matrix originally developed within EUPATI Germany and later adopted by IMI PARADIGM.
- Automated Search Function: Semi-automated searches can be done within the platform’s database so that researchers, supported by the platform team, can quickly identify the most suitable patient partners and initiate the engagement with them. Once there is a match, the Matchmaking Platform will also support the drafting of contracts and evaluate the collaboration.
- Tracking and Impact Measurement: A system to monitor the quality and impact of engagements initiated through the platform, and to refine the Matchmaking Platform and patient involvement over time.
Platform Development is Ongoing
Now in development, the launch of the Matchmaking Platform will be focused on cancer and haematology and is set to launch by the end of 2025. During this phase, functionality and engagements will be assessed to ensure it meets the needs of both researchers and patient partners. The goal is to subsequently expand to include other disease areas, creating a tool for patient engagement in research across healthcare sectors in the coming years.
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.
For more information or to get involved, please contact Eglys Gonzalez, Director of the Matchmaking Platform, at eglys@patientadvocacy.eu.