EUPATI patient involvement in medical research is transforming how patients engage with science, innovation, and healthcare decision-making. In this episode of the MS-Perspektive Podcast, physician and patient advocate Dr. Ingrid Klingmann explains why informed patients are essential partners in medical research—and how education changes everything.
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Introduction & Personal Journey
Could you briefly introduce yourself to our listeners? Who are you – and how did you become involved in medical research and patient advocacy?
Dr. Ingrid Klingmann: My name is Ingrid Klingmann. I am a physician by training. I grew up and studied in Germany, but I have been living in Belgium for more than 30 years. As a teenager, my dream was to become a family physician, ideally working in the countryside, and I worked very hard to achieve that goal.
Once I was practicing as a general practitioner, I realized two things. First, I am a very curious person and I need constant learning, which routine work could not fully provide. Second, I noticed that there were still many gaps in how patients with different diseases were treated. That made me curious about medicines development and clinical research. I joined that field without really knowing what it involved at first, but it quickly became my passion.
You were one of the initiators of EUPATI. What gap were you trying to fill, and what motivated you to take action?
Dr. Ingrid Klingmann: A key turning point for me was when I moved from being a treating physician to being a research physician. As a treating doctor, your goal is always to find the best possible treatment for an individual patient. In research, however, you work with strict protocols, often randomized and double-blind, meaning neither the patient nor the physician knows which treatment is given.
This created a major ethical conflict for me. I had to explain to patients that by joining a clinical trial, I could not choose the best treatment specifically for them. The justification for this lies in Good Clinical Practice (GCP), which is a global quality standard designed to protect trial participants and ensure reliable data.
Later, my own experience as a breast cancer patient deepened this motivation. I noticed that doctors spoke to me very differently than to other patients. We discussed options on an equal level, while many other patients experienced very paternalistic communication. That made me realize how important knowledge and confidence are for patients.
Looking back: were there any major challenges or resistance you encountered in the early days?
Dr. Ingrid Klingmann: Yes, absolutely. Patients were very interested in becoming involved in medical research, but there was a clear lack of knowledge. Researchers need input that is realistic and can be integrated into scientific and methodological frameworks. Complaining about problems is understandable, but it is not enough to influence research design.
Patients need to understand constraints such as methodology, budgets, and regulatory requirements. Without that understanding, involvement remains symbolic. The biggest challenge was the lack of a trained group of patients who could contribute in a meaningful and constructive way.
Understanding EUPATI’s Role and Impact
What exactly is EUPATI, and how did a European initiative help bring it to life?
Dr. Ingrid Klingmann: EUPATI was created as a European initiative to systematically educate patients about the medicines development process. It started as part of a large public–private partnership funded by the European Union.
Our original goals were quite ambitious. We planned to educate 50 patients to a diploma level and reach 100,000 people with freely available, lay-language educational material in several languages. Today, more than 8 million people worldwide use EUPATI materials, and over 500 patients have become EUPATI Fellows.
Why is it so important for patients to be well-informed when it comes to medical research and innovation?
Dr. Ingrid Klingmann: Well-informed patients can engage in real dialogue with physicians, researchers, and regulators. They understand risks and benefits, they ask better questions, and they can reflect on what really matters in their daily lives.
This level of understanding builds confidence and reduces fear. Patients are no longer passive recipients of decisions but become partners who can contribute meaningfully.
What benefits does patient involvement bring – not just for patients themselves, but also for the pharmaceutical industry and healthcare systems?
Dr. Ingrid Klingmann: Interestingly, treating physicians are often the hardest group to convince. Many believe they already understand patient needs. The pharmaceutical industry, however, quickly saw the value of educated patients.
Companies need patient input to design better trials, improve recruitment, and communicate more clearly. When patients help optimize trial design and participation, studies can be completed faster, which ultimately means faster access to new treatments for patients.
Can you share an example from your experience where patient involvement truly made a difference?
Dr. Ingrid Klingmann: Patient involvement can start very early in the development process. For example, in Parkinson’s disease, patients explained that sleep problems were often more burdensome than tremor. This kind of insight helps companies focus on outcomes that truly matter to patients.
Patients also contribute to protocol design, feasibility of study visits, informed consent documents, and the communication of trial results. Especially in creating lay summaries—plain-language summaries of clinical trial results—patients play a crucial role.
Education, Access & Inclusion
Who can benefit most from EUPATI today – and how do different levels of engagement make an impact?
Dr. Ingrid Klingmann: Anyone can benefit from EUPATI. Some people use individual modules when they have a specific question, such as understanding clinical trials or regulatory processes. Others decide to follow the full training program and become EUPATI Fellows.
Both approaches are valuable. Even occasional learning increases health literacy and often sparks deeper interest over time.
How is EUPATI helping ensure that medical information becomes more understandable?
Dr. Ingrid Klingmann: EUPATI materials are written in plain language and are now available in 14 languages. This helps people understand complex topics such as liability insurance, trial phases, or benefit–risk assessment when they need that knowledge.
How is EUPATI helping ensure that medical information becomes more understandable?
Dr. Ingrid Klingmann: EUPATI materials are written in plain language and are now available in 14 languages. This helps people understand complex topics such as liability insurance, trial phases, or benefit–risk assessment when they need that knowledge.
Why are lay summaries of clinical trials so important, and how can patients help improve them?
Dr. Ingrid Klingmann: In Europe, sponsors are legally required to provide lay summaries of clinical trial results. These summaries explain outcomes in language patients can understand.
Patients are essential in writing and disseminating these summaries so that results are not only published but truly accessible and meaningful.
You recently collaborated on a module about innovation in clinical trials. What trends do you see toward more inclusion and accessibility?
Dr. Ingrid Klingmann: One important trend is decentralization. More trial activities can now take place at patients’ homes or in their local environment, supported by digital tools. This reduces burden and increases participation.
However, especially in Europe, geographical and regulatory barriers still limit cross-border access to trials. Addressing these barriers is a major focus for the future.
Collaboration & Community
What makes the EUPATI network so unique and valuable?
Dr. Ingrid Klingmann: Patients bring a very special quality to discussions. Their input is deeply personal and rooted in lived experience. This requires empathy, respect, and strong communication skills from all partners to ensure patient voices are truly heard and valued.
How does EUPATI foster collaboration between patients, researchers, industry, and regulators?
Dr. Ingrid Klingmann: EUPATI creates a shared knowledge base. When everyone understands the same concepts and processes, collaboration becomes more effective and respectful. It is a true partnership.
Future Vision
What development in medical research would you like to see over the next five years?
Dr. Ingrid Klingmann: I would like to see more decentralized trials and better cross-border access in Europe, so patients can participate wherever it makes sense for them, without unnecessary administrative hurdles.
What needs to change so that patient involvement becomes a natural part of research?
Dr. Ingrid Klingmann: Persistence. Patients need to keep asking questions and expressing interest. Over time, this changes attitudes and makes patient involvement a normal part of research culture.
How do you see the role of digital tools in improving patient education and participation?
Dr. Ingrid Klingmann: The potential is unlimited. Digital tools can reach patients who were previously excluded and show them that they can take an active role. The key message is: I can do something.
Finally, what message would you like to leave with our listeners, especially patients?
Dr. Ingrid Klingmann: Please explore EUPATI and use the resources available. Move away from complaining and toward action. Knowledge builds confidence, and confidence empowers patients to shape their own healthcare journey.
See you soon and try to make the best out of your life,
Nele
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