PMNET Forum to Continue Discussion on the Use of Patient Data and Patient Involvement in Research
Building on the discussion launched at the 2025 PMNET (Precision Medicine Networking) Forum on strengthening patient organisations and involving patients in research, this year's Forum will once again feature a discussion on patients' rights, the use of patient data in research, and patient participation in research processes.
The discussion is organised by Rīga Stradiņš University (RSU) in cooperation with the Latvian Rare Diseases Alliance within the framework of EATRIS-CONNECT, a project funded by the European Union's Horizon Europe programme. It will take place on 8 October, from 15:30 to 17:00, at the National Library of Latvia as part of the PMNET Forum.
Patients' Rights and Involvement in Research
The event will open with a keynote address on patients' rights and the value of the patient perspective in research, delivered remotely by Richard Buck, a patient and partner in the EATRIS-CONNECT project. He will share his experience of patient involvement in research and in the development of healthcare.
This year's discussion will focus on patient data and its use in research, patients' rights and opportunities to engage in research processes, and the need to involve patients at the earliest possible stage of research.
These issues are particularly relevant in the field of rare diseases, where patient populations are often small and patients' lived experience and knowledge can make a substantial contribution to formulating research questions, designing studies and developing new solutions.
Panellists
The panel will include the Ombudsman of the Republic of Latvia, Dr. iur. Karina Palkova, and Dr. med. Kārlis Rācenis, an RSU lecturer, physician and researcher whose clinical and research work spans internal medicine, nephrology, clinical trials and patient care, as well as the investigation and development of bacteriophage therapy for the treatment of infections. Dr. sc. soc. Signe Mežinska, Associate Professor at the Faculty of Medicine and Life Sciences of the University of Latvia, Leading Researcher at the Institute of Clinical and Preventive Medicine and Latvia's representative on the Council of Europe Committee on Bioethics, will bring the perspective of bioethics, medical ethics and research ethics.
The panel will also feature Dr. iur. Juris Beikmanis, Chairman of the Board of the Latvian Rare Diseases Alliance, and Dr. med. Madara Auzenbaha, Associate Professor and Leading Researcher at RSU and Chief Physician for Rare Diseases at the Rare Disease Coordination Centre of Children's Clinical University Hospital. The discussion will be moderated by Marta Augucēviča, Project Manager at the Breast Disease Centre of Pauls Stradiņš Clinical University Hospital and expert at the RSU Institute of Microbiology and Virology. Representatives of the Ministry of Education and Science have also been invited to join the conversation on safeguarding patients' rights, the use of patient data in research, and ways to strengthen patient participation in research processes.
'Patient involvement in research means more than patients taking part in a study that has already been designed. It is essential to enable patients and patient organisations to become involved at the very point when research questions and priorities are being defined. In the field of rare diseases in particular, patients' experience and knowledge can be crucial in ensuring that research addresses patients' real needs,'
says the moderator, Marta Augucēviča.
Continuing Last Year's Discussion
The discussion builds on the dialogue initiated at the 2025 PMNET Forum on strengthening patient organisations and their involvement in research. Last year's Forum placed particular emphasis on the engagement of patient organisations, collaboration between patients, clinicians and researchers, and the patient voice in the advancement of precision medicine.
About EATRIS-CONNECT
EATRIS-CONNECT is a project funded by the European Union's Horizon Europe programme that aims to strengthen the digital capacity of EATRIS and foster more effective development of translational and personalised medicine in Europe. The project brings together 22 organisations from across Europe. Patient involvement is a key component of EATRIS-CONNECT: the project provides for the active participation of patients as partners throughout the entire research and innovation cycle, including research priority setting, study design and matters relating to data use.
More about the EATRIS-CONNECT project on the RSU website
EATRIS-CONNECT on the EATRIS website
PMNET Forum is an international precision medicine forum that promotes knowledge exchange, collaboration and the development of the field.
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