Hall Skaara (Bel Air Center) - phaware® interview 498

 
Hall Skaara, a resilient PH patient and founder of the Norwegian Association for Pulmonary Hypertension, recounts his 19-year journey living with idiopathic pulmonary hypertension. He shares how he transformed the challenges of the pandemic into an innovative opportunity by helping create the Bel Air Center, a virtual global PH community space. The Bel Air Center aims to foster global connections, support, and resources for patients, caregivers, and healthcare professionals.

My name is Hall Skaara. I am a patient. I was diagnosed with idiopathic pulmonary hypertension in 2005. So, I've been living 19 years with this disease, still doing very well. I founded the Norwegian Association, because there was no association in Norway when I was diagnosed. Later, we became part of the European Umbrella Association. I started working more for them. Somebody else took over the Norwegian Association. Today, I do project work with PHA Europe.

One of the exciting projects that I'm working on is something called the Bel Air Center. This is a virtual PH community that we have created.

Let me tell you about the name, first. Bel Air Hotel was a hotel we used to meet once a year outside Barcelona. Then, we had the pandemic, and we could not meet anymore. We thought, we need to meet virtually. We contacted a company that designed a virtual hotel for us. We made it into a virtual conference center. Here, we had our annual meeting with our general assembly meeting. We had the presentations, etc. Once the pandemic was over, we thought this was way too good to just scrap. So, we kept it and we developed it further.

We removed all links to PHA Europe from it, because we want this to be a global PH community center not linked to any specific association. When you log in, you walk into a lobby in a hotel. I'm actually there to greet you as the receptionist. You can send me messages and ask me questions. Then, you move from the lobby into different areas of the hotel.

We have an exhibition area for all the associations. So, each association in PHA Europe, but also other associations around the world that would like have a booth. In these booths, they have information about themselves. They can have videos. They can have documents that are uploaded. They can have links to their webpages, etc.

Also, we have an exhibition area for pharma companies that work in the field of PH. You can go into their booth and see information about their products and about their company.

We have live session room, where you can watch live sessions related to PH. Once the session is over, we put the recording into a recorded presentation room. Here, you can search for all these presentations by keywords. You can search by presenter name, etc. It's very easy to find a presentation that is fitting for you.

We try to subtitle presentations there, but also we utilize dubbing. We use artificial intelligence technology to dub, so that the person who is presenting in English can speak Spanish or Chinese or any language. At the moment, we have Spanish, German and Croatian dubbing in there, but we can do much more. This is a little up to what the community wants and requests.

We have an art room where PH patients and PH doctors have a provided us with art. You walk through a gallery and you can see artwork on the wall, and also videos. For instance, we have a PH doctor that plays piano. You can see this as an artwork on the wall.

Then we have a social area where you can meet other people who are logged on to this virtual center. You can chat with them or you can have video calls with them. Also, you can be invited to meetings with other people there. For instance, after you've gone to a presentation, you can go to a social area, meet with other people that have been at the presentation, and discuss the presentation in there.

We have an area for podcasts, and this is where phaware have provided us with all their podcasts. So this is a great resource for PH patients, carers and doctors.

We have made this open to anyone. Anyone can create an account. You do this by going to www.belaircenter.info. We've made this open to associations, too. They can create accounts in there as well as stands where they talk about their association. We have stands from all over the world. We have Japan, China, Canada, USA, most European countries, Nigeria from Africa and so on.

We had our grand opening at the beginning of the year in 2024. We have had a steady increase in the number of people that joined this community. We hope to continue growing the numbers. Not only are patients welcome, but also carers, healthcare professionals, etc. We would welcome even more participants from the medical community and associations to join and make stands. Also, pharma companies. We hope to make this the leading virtual PH platform for pulmonary hypertension.

My name is Hall Skaara, and I'm aware that I'm rare.

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