This month, we talk to Luca Roberti, the president of Associazione Apnoici Italiani (Apnoic Italian Association). He gave a presentation at the recent Sleep and Breathing conference and shares his views of the day and the future of sleep apnoea care.
In 2015 I discovered that I suffer from sleep apnea. I noticed there was a lack of information and several issues from diagnosis to choosing treatments, so I decided to commit myself to try to improve things. The idea of creating an association was born from a meeting with other patients and we founded Apnoic Italian Association APS (AAI APS) in 2016. I am President of AAI APS and in my second term. We deal with information, empowerment and advocacy for sleep apnoea, which is a very widespread condition. It is estimated about 1 in 10 people have sleep apnoea but it is a condition that is under diagnosed and under treated. With associations from other countries, we are working to create a European Network (ENSAPO), to exchange information, advocacy activities and collaborations with Scientific Societies and Policy Makers.
About a month after AAI APS was founded, while doing research on the internet, I discovered the existence of ERS and ELF and I found it very interesting. Not having any volunteer experience, to be able to participate with other associations and specific meetings on respiratory diseases was a big help. I must say that it was a very formative and enriching experience, being able to work with more experienced patients and participate in specific sessions on our condition. Every year we participate with pleasure in the ERS International Congress and the ELF Patient Organisation Network Day. As associations we also participate in the new patient advisory group (PAG) for sleep apnoea, and we get involved in task forces, as I think it is important to bring our point of view.
It was interesting to be able to present about the advocacy and screening projects we are carrying out in Italy. I presented about the diagnostic therapeutic assistance pathways that we are carrying out in various Italian regions and about a progressive web application our association made for sleep apnoea, excessive daytime sleepiness and insomnia screenings for adults and children. You can see it on https://app.apneedelsonno.it/. We also plan to make it in English.
We often hear about patient centeredness; I believe that more and more associations with expert patients can be an added value for medical specialists. I hope that in the future, we will be able to organise round tables with the participation of patients in the Congress and plenaries. It is important that our voice is heard, and it is important that the doctors who manage our therapy listen to what we have to say.
I listened to another patient who talked about his experience with respiratory failure. I believe it is important that a pulmonologist who works with patients every year understands what the fears and problems are. Even in sleep apnoea the psychological approach is so important: a multi-specialist team must work on chronic conditions.
Sleep and Breathing was a very well organised conference with interesting content. Of course I hope as soon as possible to resume live conferences or perhaps a mixed formula. The other interesting thing about the conference now being digital is that technical, medical content, which is not easy to understand for a patient, can now be reviewed for several months and gives you the time and the way to see and understand most of the sessions.
I must say that this past year with the COVID-19 pandemic has made us review new methods of working approaches and I believe that the pandemic has accelerated possible changes, for example for telemedicine and telemonitoring. We are developing several projects in this direction. I believe that Sleep & Breathing has presented important innovations in the fields of diagnosis, phenotyping, artificial intelligence such as machine learning and future studies on drug therapies. Having different therapeutic possibilities provided to the patient is an added value.
Further integration between researchers and patient organisitions. Doing a study that an association deems useful for real life would be of added value for researchers or clinicians. It must always be kept in mind that, at least in our experience in Italy, political decision-makers listen a lot to the point of view of patient associations.
