A Patient's Perspective: The Value of Shared Decision-Making

It is important that patients with pulmonary arterial hypertension (PAH) have a voice in medical presentations and clinical trials, says Eva Otter, president of Pulmonary Hypertension Association (PHA) Europe.

Otter has been living with PAH for more than 20 years, and is a long-time survivor who is now in good health.

This transcript was lightly edited.

Transcript

Can you discuss the importance of shared decision-making for patients with PAH?

I would say in the new guidelines, we have to share decision-making. This is a very important point for me. Shared decision-making is when you are a well-informed patient, and you trust your doctor, you have respect for each other, and you have a good relationship with your doctor. And [if] your medication is not working very well at the moment and you should have a new one, and the doctor tells you could have medication A or medication B, you can decide and you can ask questions: Does the medication have side effects? What does the medication do to my body? With my body? Maybe [it] increases quality of life? This is the goal. So, you can decide between A and B, and you say, “It's A.” Then you do not have so many side effects, you have better quality of life, and the medication works. This one point is very important.

Another point we are working on is to give the patients a voice. We should be loud. This takes time and we are working on it. Look at the ERS [European Respiratory Society]. I'm a patient, and I have here on my badge, "Patient." It's red, and I'm not allowed to listen to the medical presentations. I'm not allowed to visit the exhibition area, and I'm not allowed to have a voice for clinical trials. This is what we have to change in the future. This, for me, is very important.

We are also working on reimbursement. This is the next problem. Not all countries have all the pathways for medications. In Austria, we live in the land of milk and honey, and the reimbursement is working, and we have access to all the medications we have at the moment. This is [true] for many countries, but many countries in Europe do not have this. So, we are working on this.