Louise Bouman, Chair of the Dutch Pulmonary Hypertension Association, was recently invited to share her experience as a EUPATI Nederland fellow.
Pulmonary Hypertension: Rare and Complex
In pulmonary hypertension, blood pressure in the lung vessels is too high due to narrowing of the pulmonary arteries. This overloads the right heart chamber, making it increasingly difficult to pump blood to the lungs, potentially leading to heart failure. Without timely diagnosis and treatment, this chronic condition worsens and can become life-threatening.
“There are medications that relieve symptoms and relax the pulmonary artery, but a cure – restoration of pulmonary artery walls – doesn’t exist yet,” Louise explains. “Diagnosis is often delayed, allowing progression and worsening prognosis. Symptoms are often vague, start small, and are frequently confused with asthma or Chronic Obstructive Pulmonary Disease, COPD, causing valuable time to be lost.”
Louise knows from personal experience: she’s lived with pulmonary hypertension for 17 years. As chair of the Dutch Pulmonary Hypertension Association, she works for better care, awareness, and research into new treatments.
A Seat at the Table: Motivation to Become a EUPATI Fellow
Recently, there was a sudden breakthrough in pulmonary hypertension. A new mechanism involved in the condition’s development was discovered. If a compound is found, it might repair the proliferating lung vessel tissue.
“I absolutely wanted a seat at the table. The patient’s voice must carry significant weight.”
Louise: “It gave hope! But biotech companies immediately jumped on developing things, then approached European patient organizations for patient perspective input. Though I had a pharmaceutical industry background, I lacked specific knowledge about patient participation’s role in drug development. And with these important developments, I absolutely wanted a seat at the table. The patient’s voice must carry significant weight.”
This led Louise to the EUPATI Netherlands training. “I wanted to know how to make real impact as a patient representative. What’s everyone’s responsibility in the process? Where can patients make a difference? The training gave me tools and insights to fulfil that role completely.”
What Makes EUPATI Netherlands Valuable
Looking back on the training, Louise mentions 3 key benefits:
The Network
“I now have contact with other fellows and professionals to share experiences and knowledge. This is essential for a small organization like ours.”
The Practical Approach
“Field trips to places like the National Healthcare Institute were incredibly educational. It’s more valuable than theory alone; you see how processes work in practice and make useful connections.”
Confidence
“The knowledge I gained gives me more confidence. I now understand how situations really work and can better contribute to discussions and decisions. I know what I’m talking about.”
Important Eye-Opener
A concrete example was her participation in a scoping meeting at the Healthcare Institute, where she provided the patient perspective. “Because the training gave me good insight into how the Institute works, I went in less blindly. This made me less nervous and able to support my contribution well. I later heard the doctors present were content with how I’d expressed it.”
This was also an important eye-opener for Louise: “You discover at some point that researchers and doctors don’t know everything either. That you can add something new and useful for them. And then such research suddenly becomes real collaboration.”
From Knowledge to Influence: Patient Perspective in Practice
Since the training, Louise is even more involved in various projects, from advising researchers to participating in (inter)national workstreams, task forces, consortia, and advisory boards. She notices she’s now involved more quickly and seriously in discussions about (drug) research. Yet sometimes researchers still approach her just for that one required patient involvement checkbox.
“Researchers are still adjusting to involving patient representatives early in the process. Often it’s due to time pressure for grant applications. But when researchers realize we can really contribute positively to research, ‘just checking the box’ becomes ‘we want patient participation.'”
Practical and Concrete Input
Patient representatives have more specialized knowledge about their condition and can therefore provide better practical and concrete input. “Like the formulated research goal,” Louise illustrates. “Is that goal what the patient wants? Is it relevant to their life? Or do you as a researcher find that goal relevant? And research execution: nice that you want people to return every 3 weeks, but how do you organize that with sick people who must travel from across the Netherlands?”
The Power of Collaboration
The EUPATI Netherlands training also advanced the Dutch Pulmonary Hypertension association as a whole. “We work more often with clinical research centers,” Louise explains. “And we’re now more active internationally. Important, because with rare conditions, a phase 3 study must be conducted worldwide. Simply because there aren’t enough patients otherwise. So if we want to really influence drug development, we must join international umbrella organizations.”
Phase 3 drug research is an important step in testing new medicines before market release. In this phase, the drug is tested on a large group of patients (usually hundreds to thousands) to verify safety and effectiveness. The goal is to see how well the medicine works, what side effects it might have, and how it compares to existing treatments. Phase 3 results determine whether the drug is approved by health authorities like the CBG in Netherlands or the European Medicines Agency, EMA, in Europe.
Future Vision: Patient Participation as the Norm
Louise dreams of a world where patient participation is a fixed and natural part of drug development. “We’re talking about treatments for patients; logically, they should have a voice in it. EUPATI is the perfect training to achieve that.” Louise continues working toward this daily. “If my work can contribute even a little to better care and treatments, that’s the best thing I can do.”
About EUPATI Netherlands
Well-trained patient representatives are essential for good and appropriate medicines. With EUPATI NL, INVOLV offers a unique training that educates patient representatives to become full discussion partners in medicine research and development. The training is hybrid, combining online learning modules with field trips, training days at stakeholders, and interesting (networking) meetings.
You can find the link to the original article in Dutch here