Hall Skaara - phaware® interview 526

Hall Skaara, representing PHA Europe, brought the patient perspective to the forefront at the World Symposium on Pulmonary Hypertension, joining other members of Task Force 1. PHA Europe was well-represented with delegates including Eva Otter, Monika Tschida, Natalia Maeva, Tadeja Ravnik, and Nina Kobler. This prestigious event gathered over 1,500 of the brightest minds in the field of pulmonary hypertension, offering a unique opportunity for patients and professionals to collaborate and share insights, as well as for patient associations to network.

This Special Edition Episode Sponsored by: Johnson & Johnson.

My name is Hall Skaara. I'm Norwegian. I was diagnosed with pulmonary hypertension back in 2005. It's actually been 19 years living with this disease. I'm doing quite well. I'm still on monotherapy. I started the Norwegian (Pulmonary Hypertension) Association because there were no associations in Norway. We became part of PHA Europe. I started getting more involved with the PHA Europe work and somebody else took over the Norwegian Association.

I've done a lot of tasks with PHA Europe. One of the most interesting things I've participated in was being part of a task force for the World PH Symposium. I don't know if everyone is familiar with what the symposium is, but this was initiated in Geneva in 1973. There were only 13 participants at this first meeting. Their key objective was simply to understand the basics of PH. Then, the next time they met was in 1998. Then, they met in five years intervals up until 2024.

The key objectives have changed somewhat now. Now, it's more to promote knowledge exchange by sharing the latest research and clinical advances, promote collaboration and networking, update and development of guidelines, educate healthcare providers and stakeholders, and raise awareness for PH. During this last seventh symposium, there were approximately 1700 participants.

I had the pleasure of being part of one of these task forces. They divide things into working groups. They had 15 working groups. In 2018, it was the first time that patients were involved in this work. They were the last task force and the last to present. I think many had left the conference area at the time. So, they did something different this time. They let the patient task force be number one. We had the pleasure of opening this conference. I think this was very fitting. It showed their willingness to let the patient be in the center.

For me, it was a great thrill. I was one of the presenters. My son sent me a video of him bungee jumping. I thought, "I've never done stuff like that. But what I've done is that I've talked in front of 1700 specialists."

Our work resulted in this presentation at the symposium, but also in some proceedings. These proceedings were published in the European Respiratory Journal on August 29^th, 2024. Anyone that wants to have a look at that could go into the journal and read not only our proceedings, but also the proceedings from the 14 other task forces.

We had four doctors on our task force. It was Jimmy Ford, Simon Gibbs, Adam Torbicki and Victor Moles. We had two patients. It was me and Colleen Brunetti from PHA in America, and one former patient who has gone through a double lung transplant, Pisana Ferrari. Then, a patient advocate, Gergely Meszaros.

We shared our presentation with Colleen. Her main thing was “no decision about us without us.” She also talked about how it was for her personally to live with PH. Then, Adam talked about the past of the patient associations, how things started in the US around the kitchen table, and also the start of PHA Europe.

One of the first questionnaires where they talked to patients about quality of life and life expectancy. Even at that point, many, many years ago, they talked about how the patients, instead of living longer, they wanted to live with better quality of life. But I guess all people are different. I want to live as long as possible, so maybe I feel a little different than other patients.

Then, Jimmy talked about the global assessment of patient priorities. He started with a great quote. I think he said, "The good physicians treat the disease, the great physicians treat the patients who have the disease." We talked about how the patients, they need expert, multidisciplinary teams, proper diagnosis, access to medication, and a patient-centric approach.

One thing we have done in this task force is also we have collaborated with teams around the world. A small team of global patients and providers. We gave them a survey to learn about the situation of PH care around the world. It was very interesting to get their feedback, because often we are very centered around the US and Europe. Here, we got more feedback on PH care all over the world. One of the things they talked about was that in many places they don't have enough expert centers. They have also poor access to right heart catheterization. As we know, if you don't have right heart catheterization, you don't really have a proper diagnosis.

They have lack of medication in many places. In many countries you have a lack of transplant options. Also, a lack of rehab centers. What we see, also, is that there is a big difference between global south and global north. This is something that needs to be handled in the future. Jimmy talked about one way of handling this is that we have more cross border collaboration. PVRI recently had a survey with about 3,500 responders from all over the world, from 88 countries, actually. They point out many of the same things that these experts that we talked to also pointed out.

Then, Pisana talked about the patient associations and how we have come a long way since the beginning. How they are much more professional and structured now than before, but we still work on some of the same things for instance awareness. We have the World PH Day on May 5th. We have the Awareness Month in November, Rare Disease Day on February 29th. Of course, also work like phaware, creating a lot of awareness for PH.

We are also involved in advocacy in a totally different way now than before. We are part of steering committees in trials, working together with the regulatory authorities, etc. Also, for the first time in 2022, patients were invited to take part of the PH guidelines. We expect that this will also happen for the next guidelines that will come out soon.

Then, Simon Gibbs, and I, talked about the importance of PROMs, Patient Reported Outcome Measures. These are just simply surveys that patients fill out before go into the doctor. It facilitates the dialogue between the doctor and the patient. Shared decision making will be much easier when you use PROMs.

There has been a change also in this. In 2011, 20 European expert centers reported that about 20% of them used PROMs. In 2022, about 65% of them used PROMs. I talked about how I use PROMs. Actually, I developed my own PROMs to kind of track my disease. By doing this, I can see if I was too active or not active enough and how my activity level and other things influenced my disease. I think this might actually be one of the reasons that I’ve lived so long with this disease.

Also, surveys have shown that if you use PROMs, then the patient’s satisfaction will increase. Also, you can use PROMs to identify risk factors. As I said, with PROMs then you have shared decision making. You enable this in a much better way than if PROMs are not used.

Then, we talked about future directions. This was Gergely that talked about this. He talked about that in the future, I think we will see more and more that patients are regarded as partners to healthcare providers. He talked about collaboration with all stakeholders.

I think when you introduce patients into committees and to trials into work that normally have been reserved only for healthcare providers, you eventually drive the designs forward. You enable what patients regard as important to be in the forefront of all the work you do. Patients involvement is really important in all aspects. Of course, this also puts a burden on us as patients or requirements. We need to empower ourselves in order to be able to take part in discussions. I think this will benefit the entire industry and also patient PH care, of course.

You don't ask to be part of any committees. They come and ask you. It's a great honor to be asked to be part of this work, because we know that this work is very important. It's a great honor, but also a great responsibility, because I will be talking on behalf of a lot of other patients. But this is the good thing about having this disease and living with it for 19 years. I know how it is to live with it. I know what the priorities are and I know how other patients feel. It's not so difficult for me to tell what the important things are for other patients and to be their voice, to put it that way.

We get great feedback whenever we as patients talk to HCPs and also the pharma industry. The feedback is always very good. I liked the feeling of standing on stage and looking out at the audience, because you just see open faces everywhere and people are very open to your message. I remember talking to a person and he said as a patient, you can really say nothing wrong, because everything you say is right. This is how it feels like to be a patient.

I think also we are welcomed into this community. I think, also, it's a process that once you start and once you start to involve patients in this type of work, there is no going back. The patients will just continue getting more and more involved in all aspects of PH care.

I'm optimistic on behalf of the patients, first of all, because we see medical advances and now we see kind of a new era of PH medication. We understand that as the year goes by, we will have better and better medication. Hopefully, in not too long, it will be a disease that will be manageable.

Also, I have great hope for the patients being more and more involved in the different aspects of the science, the trials, committees, regulatory authorities -- in all my aspects of PH.

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

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