This month we spoke to Dimitris Kontopidis, the new chair of the European Lung Foundation. Here, we get to know him a bit better and what he hopes to achieve during his term.
I am a 41-year-old cystic fibrosis (CF) patient from Greece with a passion for design in all its forms. My first studies were in graphic design & communication, and then later I studied fine arts and architecture in Spain. I then specialised in social entrepreneurship, where I ran different social enterprises and projects to empower disabled people and patients. For the last 14 years I have been dedicated to patient advocacy, trying to provide solutions to our problems as patients through different positions in national and European organisations and committees. I was able to participate in the creation of patient-centred health policies and services thanks to postgraduate studies in health management through value-based healthcare systems.
Through this role as ELF Chair, both I and all of ELF believe that we can, on a European level, empower patients with respiratory diseases to improve their treatment conditions and reduce inequalities across countries. I know that this is possible from my 12 years of patient advocacy. I saw that in Greece in 2012, we were losing 1 patient with CF a month and that there was a lower life expectancy for people with CF in Greece by approximately 10 years less than other EU countries. This was due to the different level of care in our country and not necessarily our disease. We managed to change this situation when some of us patients dedicated ourselves to patient advocacy by becoming involved with the patient organisation CF Europe. During my time there I learned that we could change the conditions for people with CF, such as when the life-changing, high-cost treatment for CF was made available in Greece through patient advocacy.
While I am ELF Chair, I will prioritise 3 areas of actions:
1) Digital health transformation,
exploring the opportunities created through the transformation of health, with digital devices and apps.
2) Lung transplantation & lung health
mapping the challenges of lung transplants in different countries and protecting lung health
3) Rehabilitation, physical exercise & health habits
to provide the best possible maintenance of our health
Patients are the richest source of information about a condition. They have a range of different preferences and needs, which makes them best placed to input into the design and evaluation of targeted health services. As patient experts, representatives and advocates, they can transfer knowledge and experience from different respiratory diseases to healthcare systems of each country. This will enable a fairer distribution of limited health resources, more efficient and personalised treatments and patient-centred policies.
A defining moment of my life was when I was a teenager. I was afraid that I would die early. I was in denial about everything. I didn’t want to study for university. My pulmonologists had told me that there was a low chance of survival. But what if I did survive, then what would I do? Fortunately, I listened to him, I studied, and I have lived through so many experiences, and I am alive now to talk about them. The message I want to share is that when we have the right education as patients and the right people around us (such as healthcare professionals that can provide emotional support as well as medical advice) we can change our outlook. Our illness can be a gift that enables us to appreciate our time more. External conditions can change, and this happens when patients dare to lead. I have met many such patients in every country, and it is my pleasure to be connected, to take courage among us and pull each other along to co-create our future days and give value to each breath!
