'We are working together towards one goal: to eliminate COPD'
Jos Pielage and Pieter van Eck consider their volunteering for the Patient Advisory Committee of the Longfonds research on lung tissue repair especially important. Especially for people with lung disease. 'And mightily interesting!'
Just before each meeting, Jos Pielage thoroughly reads up. 'That is tough stuff sometimes. Because it is often difficult to understand exactly what researchers are doing. Especially since this lung study is still in the lab phase. We are here to keep researchers on the right track. Pieter van Eck: 'Researchers are sometimes working on a very small piece of the puzzle. By asking them questions from the patient's point of view, they see the bigger picture again. This benefits the research. It is important that they stay focused on what they are doing it for.'
Jos and Pieter are both members of the Patient Advisory Committee (PAC) of the international study on lung tissue repair. With the PAC, patients are directly involved in this scientific research that Lung Fund provides funding for. Pieter is chairman. " As of 2018, I have been committed to Lung Foundation Netherlands. Since 2020 as a Lung Foundation Experience Expert (LED'er), where I get to review grant applications for lung research. And since 2021 for this PAC. For example, we are involved in research on mini-lung. With this, researchers can target solutions to restore damaged lungs to health.'
It is especially important that patients can tell the researchers what they are up against and what is important to them. And conversely that researchers can tell how their 'piece of the puzzle' fits into the search for solutions to repair lung damage in COPD, for example. Pieter: 'As a PAC member, we were able to give suggestions at the beginning to give the enquiry direction on what should come out. For example, we would prefer a solution to repair lungs without surgery, and that as many people with COPD as possible can use.'
Only research never goes as fast as patients would like. Jos: 'We cannot expect the researchers to come up with a solution tomorrow. It is a quest and the researchers do not know beforehand whether their idea will be successful. So what makes it interesting for me? Things can also move fast all of a sudden. ' Pieter: 'I find it mightily interesting to hear what's going on. And I find it valuable that we give 'the patient' a face and can think along with researchers. Because even if the solution is not there tomorrow, at the end of the day, we are working together towards one goal: to eliminate COPD from the world.'
Text: Naomi van Esschoten