Full transcript of the June 6, 2023 AfPH webinar of “Partnering with Patients and Shared Decision Making: A New Paradigm in Pulmonary Hypertension Care?” now available

You can also download the slides, recording and text of transcript in pdf format in several languages at this link on the PH-KSP.




Good day, and greetings, wherever you may be joining from. Welcome to the first webinar of the Alliance for Pulmonary Hypertension. This is the initial installment in a series of six webinars planned for 2023 by the AFPH, a non-profit organization registered in Brussels. The mission of the the AfPH is to disseminate knowledge and expertise about pulmonary hypertension (PH) and foster collaborative activities within the broader PH community. I am Andreas Reiman, co-founder and managing partner of admedicum, and we are pleased to provide support to the AfPH as a Secretariat, facilitating this inaugural webinar.

I am pleased to introduce a highly esteemed faculty, starting with Professor Marc Humbert, a globally recognized expert in the field of PH. He serves as the Director of the French National Reference Center for PH and will be our keynote speaker. Additionally, I am delighted to welcome two experienced PH patient advocates, Pisana Ferrari and Gergely Meszaros. We will first listen to Professor Humbert as this webinar focuses on the significance of shared decision-making in PH therapy. Professor Humbert will also provide updates on the most recent guidelines pertaining to PH. Thank you.


Thank you, Andreas, and greetings to all participants. I extend my gratitude to the Alliance for Pulmonary Hypertension for inviting me to be a part of this inaugural webinar. Allow me to introduce myself, I am Professor of Medicine at University Paris-Saclay in France. I hold the responsibility of overseeing the French Referral Center for Pulmonary Hypertension, which is a significant and crucial task. I firmly believe that collaborating and working with patients is a top priority in my role.

Please refer to the next slide, which displays my disclosures as a professor of medicine associated with a referral center. It is important for me to transparently state that I sometimes collaborate with companies that are dedicated to finding innovative solutions for patients with pulmonary hypertension.

Moving on to the subsequent slide, you will see a list of individuals who were involved in the development of the 2022 European guidelines for the diagnosis and treatment of pulmonary hypertension. It is crucial to emphasize that guidelines serve as valuable recommendations for practitioners worldwide. They provide guidance on the diagnosis, classification, assessment of severity, and treatment of various forms of pulmonary hypertension. The development of these guidelines is carried out in close collaboration with esteemed societies such as the European Society of Cardiology, the European Respiratory Society, and the International Society for Heart and Lung Transplantation. Additionally, the European Reference Network for Rare Lung Diseases (ERN-LUNG) has endorsed the guidelines.

It is important to highlight that the guidelines are evidence-based and therefore grounded in factual information. Guideline development is a demanding undertaking that involves systematic reviews, meta-analysis, and numerous teleconferences with the entire group of individuals listed on this slide.

I would like to emphasize that two patient representatives actively participated in the development of these guidelines. The two patient representatives, Pisana Ferrari and Gergely Meszaros, are present with me today. Both of them played significant roles in the guideline development process. They were not merely on the periphery but were central figures in shaping the guidelines. It is worth noting that this is the first time we have included patient advocates as co-authors of the guidelines because we value their insights and perspectives.

Shared decision making and patient empowerment are crucial aspects for the future of pulmonary hypertension management. The collaborative efforts have been fruitful, and I would like to express my gratitude to the patients and all the members involved from diverse backgrounds and countries. Special thanks go to Marion Delcroix and Stephan Rosenkranz from Belgium and Germany, who dedicated a significant amount of time to the development of these guidelines.

The concept of partnering with patients and shared decision making is relatively new, as previous pulmonary hypertension guidelines only briefly mentioned it. However, in the current guidelines, shared decision-making and patient empowerment are emphasized throughout, and are here to stay. These concepts will be further developed in future guidelines.

I would like to highlight that the next World Symposium on Pulmonary Hypertension will take place in Barcelona at the end of June 2024. During this symposium, a major task force comprising patients and advocates will be established, focusing on patient empowerment and the involvement of family members. The next speakers will delve deeper into the topic.


Thank you, Professor Humbert Before I pass the floor to Pisana, I would like to remind you that you can ask questions to the speakers using the chat function. My colleague, Rob Pleticha, will assist me in addressing the questions at the end of all three presentations. Without further ado, Pisana, the stage is yours.


Good afternoon. Many thanks for the introduction, Andreas, and thank you, Marc, for the excellent overview. It is truly an honor to have you here today, and I feel privileged to have been part of the task force and its work over the past years.

I am delighted to be here today to discuss the challenges and potential solutions in shared decision making. Some of you may already know me, but for those who don’t, I am a former pulmonary hypertension patient. I was diagnosed 35 years ago and underwent a double lung transplant 21 years ago. Since then, I have been actively involved in patient advocacy for pulmonary hypertension and organ donation and transplantation.

Now, let’s dive into what the guidelines have to say about partnering with patients and shared decision making.

The concept is introduced right from the beginning, in the Introduction section, where it emphasizes the need for a multifaceted, holistic, and multidisciplinary approach to managing pulmonary hypertension. “This approach requires active involvement and partnership between patients with PH and clinicians”.

Furthermore, as Marc mentioned earlier, shared decision making is a recurring theme throughout the guidelines. I have taken a quote from one of the sections that highlights its significance. It states “Prior to treatments and decisions patients and their next of kin should be provided with appropriate and timely information about the risks and benefits of treatment options, according to the guidelines. This enables them to make informed and joint decisions with the medical team”.

An interesting aspect is that next of kin are included in the decision-making process and are considered partners in shared decision making.

To provide some historical context, the concept of partnering with patients and shared decision making is not new. One of the first articles was written in the late 70s by a bioethicist at Georgetown University and was titled “The Patient as a Partner.” This article focused primarily on patient involvement in research.

However, shared decision making is entirely new for pulmonary hypertension, and the new guidelines have introduced it, for the first time ever, in various sections, including treatment strategies, transplant surgery, pulmonary hypertension and pregnancy, adherence to treatment, and ethical issues and end-of-life considerations.

While the guidelines have set the framework, implementing shared decision making in real-life situations presents its own challenges.

The question arises:

  • Is the time ripe for this transformative approach in PH care?
  • Are healthcare professionals and patients prepared?
  • What are the challenges, and how can they be overcome?

These are important considerations for successful implementation.

The challenges to shared decision making on the part of healthcare professionals are multifaceted. Some of these challenges include:

  • Traditional paternalistic view: In certain cultures, and contexts, there may still be a traditional view of the doctor-patient relationship where the doctor is seen as knowing best. Shifting away from this viewpoint can be a challenge.
  • Lack of trust: Healthcare professionals may sometimes have difficulty trusting the patient’s capacity to understand medical information.
  • This is very much connected with the way medical information is delivered. Explaining complex medical concepts in a simple and understandable way can be challenging, especially for healthcare professionals, who come from a scientific background. It is crucial to recognize the need for clear and accessible communication.
  • Aligning personal views: Healthcare professionals and patients may have differing views on necessary care. Professionals may prioritize medical outcomes, while patients may prioritize quality of life. Finding common ground and aligning preferences can be a challenge.
  • Communication skills: Effective communication is essential for shared decision making. Communication encompasses verbal and non-verbal aspects, such as language, gestures, attitude, tone of voice, and listening capacity. Developing strong communication skills is crucial in creating a favorable environment for shared decision making.
  • Time constraints: Healthcare professionals often face time constraints in their interactions with patients. These constraints can limit the opportunity for in-depth discussions and shared decision making. Managing time effectively while still involving patients in the decision-making process is a challenge.
  • Language barriers: We live in increasingly multicultural societies and language differences between healthcare professionals and patients can create barriers to effective communication and shared decision making.

The challenges to shared decision making on the part of patients include:

  • Lack of knowledge: Many patients have limited knowledge about pulmonary hypertension, in great part due to its rarity and complexity. There are different forms of pulmonary hypertension, some are rare, some are more common, each has several subtypes, and patients may struggle to understand these distinctions. Some may not even be aware of the differences between pulmonary hypertension (PH), pulmonary arterial hypertension (PAH), idiopathic pulmonary arterial hypertension (IPAH), and other related conditions. The abundance of information can be overwhelming and difficult to comprehend.
  • Low literacy: General health literacy levels vary among individuals. Some patients may have limited knowledge about basic medical concepts such as blood pressure, what an artery is, let alone a pulmonary artery, or the fact that the heart has a right and left side.
  • Misinformation: With the advent of the internet, patients are better informed but not necessarily well informed. Patients may turn to search engines (Dr. Google) and find scientific information, which is difficult to understand, or inappropriate or even incorrect information. The same applies to some social media groups, which are wonderful and provide great support to patients, but where patients share personal experiences that may not necessarily be valid for the rest of the patient population, e.g. a treatment that does not work well for one patient may be very effective in another.
  • Difficulty expressing concerns, opinions, and preferences: Patients may experience anxiety and fear during medical visits, and these emotional aspects may hinder their ability to express themselves effectively.
  • Unwillingness to engage in shared decision making: In some cultures, there is a strong emphasis on unquestioning respect for authority, including doctors. Patients may be hesitant to question or challenge the opinions or recommendations of healthcare professionals.
  • Patient preferences: Some patients may prefer not to be fully informed or involved in the decision-making process. This could be a coping mechanism to manage the emotional impact of a severe diagnosis, or a patient may simply prefer to delegate to a family member or caregiver.
  • Cultural and religious beliefs: some religions do not allow blood transfusions for example, others may disapprove of certain interventions. Age is also a factor, whether young or old, and cognitive issues as well.
  • Time and Language barriers are common to both patients and health care professionals.

To address these barriers to shared decision making, the following approaches can be taken:

  • It is important for both healthcare professionals and patients to understand each other’s perspectives and priorities. Finding common ground and seeking compromises can help bridge the gap between medical recommendations (a more aggressive treatment or intervention), and patient preferences (a treatment which is easier to administer and has less side effects).
  • The most important factor is the need for understandable information, in various formats and languages, to cater to all patients, and to help them understand the issues at stake. This can include images, videos, infographics, cartoons, graphic novels, or whatever is necessary. It is essential for patients to make truly informed decisions about their care and for true patient empowerment and shared decision making. Patient associations can play a key role in facilitating this process in collaboration with healthcare professionals. I’m delighted that the guidelines now mention co-creation of educational materials with healthcare professionals. This is very important.
  • Improving communication skills: Effective communication is crucial for shared decision making. Healthcare professionals should strive to enhance their communication skills, including active listening, empathy, and clarity in conveying information.
  • Making the most of available time: Patients can optimize their time by preparing for medical visits, writing down their questions and concerns, and expressing their preferences clearly. Healthcare professionals can make the most of time by giving patients their undivided attention and avoiding distractions such as taking calls of looking at their pcs. In weather forecasts one talks of perceived temperature and real temperature. Likewise, there can be a perceived time and a real time. Time can be perceived as much longer if it’s optimized in the best way.
  • Addressing language barriers: Language barriers can hinder effective communication and shared decision making. Using interpreters or translation services can ensure that patients fully understand the information and can actively participate in the decision-making process.

To recap, the inclusion of patient representatives in the task force testifies to the scientific community’s commitment to the concept of partnering with patients and shared decision making. It’s a major milestone that bodes well for the future and is here to stay, as Marc said.

It also recognizes the great value that patients can bring to discussions through the knowledge gained from their direct experience of the disease.

There are limitations and contraindications, and healthcare professionals point out to urgency cases where there’s no time available to consult, or if the gravity of the situation requires that the most aggressive treatment should be put in place. The age of patients, whether they are young or older, cognitive issues, and sometimes costs are factors to consider.

In conclusion, achieving true shared decision making will take time and efforts from both healthcare professionals and patients.

Patient empowerment is at the very heart of effective shared decision making. Our next speaker will address this important topic. I now hand over to him. Thank you for your kind attention.


Thanks very much Pisana for sharing with us the challenges of shared decision making. As you mentioned, it is crucial to empower patients, and I’m glad that our next speaker, Gergely will discuss this important topic.


Good morning, good afternoon, and good evening to everyone. Let me welcome all of you who are devoting your valuable time to this webinar. I hope you enjoyed the concept of shared decision making, as we are going to delve deeper into what it entails.

As Marc mentioned, I was part of the task force on the ESC-ERS guidelines on pulmonary hypertension, along with Pisana. This is the connection that led me to elaborate more on patient involvement. I’m pleased to inform you that the new guidelines now include the term “patient empowerment.”

Under this term, you will find various definitions, as shown on this slide. It may seem busy, but I want to highlight some key points. Firstly, we need to emphasize that there are different levels of patient empowerment. When we talk about empowerment, it signifies that patients have power, control, and influence. This is the core concept.

But what does it really mean? It means that patients have a greater say or influence in some decisions that can impact their health and the management of their disease. This pertains to the individual level. However, there are other approaches we’ll discuss later.

When we talk about control, we also need to address another aspect of patient empowerment. Where we see that it’s not always the patients who are driving the process, but rather it is a collaborative approach. As previously mentioned, shared decision making and patient empowerment are interconnected concepts. Many aspects correlate between shared decision making and patient empowerment.

When you consider the individual level, a patient should be in a position to share his/her experiences and perspectives. There is also a patient association level, which was a key concept we focused on within the new ESC-ERS guidelines. In the latest guidelines, there is a dedicated section on patient associations and patient empowerment, which was not present in the previous version.

Thanks to the inclusive atmosphere during the task force, we were able to propose and incorporate this aspect, which was well accepted by our colleagues and healthcare providers. The guidelines state that patient associations play a key role in bridging the gap between healthcare providers and patients. Patient associations deliver various services that contribute to the empowerment of patients. The new guidelines emphasize the collaboration between healthcare providers and patient associations, and it is recommended that they work together.

The recommendation on such a collaboration received a C rating, indicating that it is not well established and lacks supporting trials but is based on consensus. Nevertheless, this is seen as a significant project, and we are aiming to provide a solid basis and potentially upgrade the recommendation level in the future.

In other disease areas, there have been efforts to build collaborations based on systematic reviews and measurable data, which can lead to higher levels of recommendation for such collaborative approaches.

The next question is, “Do I have access to the information I need to make informed decisions about my health?” This question highlights the importance of providing patients with access to relevant and understandable information that empowers them to make informed decisions about their health.

The PH Patient Charter emphasizes the rights and needs of patients, including the right to be treated as an individual with unique needs, the right to be informed and involved in decisions, and the right to access relevant information. These questions serve as a self-reflection tool for patients to assess their level of empowerment and engagement in their own healthcare journey.

In this part of my presentation, I discuss the importance of patient empowerment and pose several significant questions. One question I raise is whether I, as a patient, am an equal partner in all decisions regarding my health. I emphasize the need for shared decision-making and wonder if my input, including my real-world data, holds value when discussing my disease management with my treating physician.

I recognize the complexity of patient involvement, which encompasses various domains and constructs. I question whether I possess the necessary skills to effectively communicate and advocate for myself. Do I have the health literacy and competence to engage with patient associations and healthcare providers as a true partner in my care?

It’s important to note that patient involvement does not imply becoming a medical expert like “Dr. Google”. However, having a basic understanding of my own disease and its mechanisms is crucial. This knowledge allows for fruitful discussions with my physician, even within the time constraints we often face in healthcare settings.

I acknowledge that there may be challenges in fully implementing patient involvement due to these time constraints, and I’m aware of comments and concerns regarding this issue. Nevertheless, I believe that fostering patient involvement is essential for better healthcare outcomes and patient satisfaction.

I see within the chat that the treating physicians are not always having enough time to address all these questions. But if you are not prepared as a patient for such kind of patient visit, you are losing your valuable time that you are spending with your teaching position physician. So, it’s crucial to be well-prepared. Later, we will talk about how the empowered patient can contribute to a more effective and efficient healthcare system because if you are not prepared, you are just losing time.

The fourth component I would like to spend a little time on is the presence of a facilitating environment.

We know that in some countries, due to cultural reasons, it is not even possible to disclose that you have such a disease. We also know that you might risk your job or workplace if you disclose such a condition to your employer. However, on the other hand, I need to stress that the guidelines provide a facilitating environment.

The recommendation is that healthcare providers need to collaborate with patient associations. I know it’s not about all patients, so there’s a bridge again, but it’s very important. Once we have this, it means that it is facilitating the environment.

I forgot to tell you on the last slide, but I think it needs to be underlined and it was also addressed: the information. What type of information should the patients receive throughout the patient journey? We know that in some cases, as Pisana mentioned, some of the patients are not really interested in some of the details, while others would like to be expert patients. Some of the information throughout your patient journey is appropriate, while some are not.

I just checked last night, the whole document, the complete guidelines, consists of 144 pages. It has more than 800 references, which means that none of us as patients will go into details. But I’m really happy to let you know that we have, and many thanks again to Marc and the Chairs of the Task Force, that we have a lay summary of the guidelines, which really supports such kind of information needs of the patients and really contributes to your understanding of the disease and your role as a patient.”

On the last part of this slide, you can see another grouping of elements and components of patient involvement, but there are some overlaps. In the next slides, I will show you why it is very important and why it’s actually a disadvantage for us.

But when it comes to the question that we would like to have patients who are informed, who are partners, who are in the position to take part in real discussions as part of the shared decision making. We always ask the question why it matters, why it is good for the patients. Is it good for the community? Can we measure it? Is it really relevant?

Yes, actually it’s really relevant. The patient improvement concept comes from the WHO from 1998, so it’s not a very new concept. However, we just have in the new guidelines in 2022, so it’s a long journey about patient empowerment. We see in other guidelines that it already happened and in other disease areas. I’m going to talk about this in another conference, how we as patients were involved and patient advocates were very involved in this matter. And, you know, it’s important to emphasize and underline that it’s not only a mandatory tick box that you are involved and gone, but as Marc mentioned, we were real contributors by proposing some of the texts in the healthcare, in the patient centers, PH and patient empowerment, patient associations, quality of life questionnaires, and so on. So patient empowerment counts, and it also did in the task force.

But, as I questioned previously, does it matter for the community? Yes, it matters because if you are an empowered patient, you can be treated in a more effective way. The country, the healthcare system can save more time on this. One of the papers I’m referring to is coming from the UK from the NHS, and they were really happy that once they could measure that some of the patients were getting more and more in terms of health literacy and so on, they have better care.

In Germany, they also run such kind of survey and they realize that higher the level of health literacy level contributed to better treatment adherence. They reported fewer chronic diseases, and, last but not least, it resulted in a better quality of life. But once we are talking about patient empowerment, you already learned that it’s a very complicated term. There are lots of domains and constructs on how we can actually build up these concepts, and there were lots of efforts whether or not we can measure this.

My last topic on this slide is about whether or not we can measure this. There are lots of tools on how we can measure but, unfortunately, how we can measure such kind of achievements and how we can measure some qualitative or quantitative features will generate difficulties.

I’m really sorry that not enough attention was paid to a very important paper which was issued almost at the same time with the guidelines, which is about the quality indicators of pulmonary hypertension management. Pisana and myself were also part of it, and I’m really grateful for ESC for the methodology they provided in this one because in that paper, they would like to measure how the pulmonary hypertension management for adult patients is happening, and there were lots of domains we were talking about. And this is the same situation for patient empowerment, and this is the biggest problem because we have lots of domains.

We saw that patient-involved empowerment is about patients’ care, it’s about health literacy, we see that it is about patient actions and behaviors, but how can we measure it whether a patient is empowered or not? There was a systematic review of more than four thousand papers that was published some years ago, and they realized it’s too complex. It’s a big shame, I think, that we haven’t managed to come up with some measurable indicators on how we can measure patient empowerment, but it is always difficult to measure such kinds of concepts. We already know it from other parts of domains of pulmonary hypertension when we are struggling with the quality of life.

Patient empowerment is coming up with some patient reported outcome measures which can be disseminated and figure out whether the patients are impoverished or not. And this concept also goes to the next webinar we are going to have, but I would not like to steal more time on this, and probably Andreas will talk more about the next webinar. I’m really happy that I managed to walk you through on this concept.

Last but not least, I would like to emphasize and I’m really grateful for all these slides we have from Marion Delcroix and also from Stephan Rosenkranz, where we have the patients in the center. Let me close my presentation with this very nice slide. It is coming from the official presentation from the guidelines where we have lots of elements, lots of novelties from the new guidelines, and we should never forget that the patient should be in the center. May thanks for your attention.


Thank you so much Gergely for sharing with us your view on how to empower patients, and that’s really a key element actually also what I understood from the new ECS/ERS guidelines on pulmonary hypertension that bring for the first time ever patient representatives in developing them and stressing the importance of shared decision making.

And as you mentioned, this is really the first of a series of webinars discussing the Novelties those guidelines bring to the pH Community both to the medical community but also to the patient community. And our next webinar will be indeed on patient reported outcome measures, and that will be more details to follow. And there will be other webinars on other subjects like the treatment algorithm new model multimodal approaches to care pregnancy Family Planning and the role of patient associations.

But now let’s stay with the subject now, and thanks very much for sharing the free speakers sharing with us your views on shared decision making. We have already received a couple of questions.

One question is for Professor Humbert from a participant who first and foremost wanted to thank you Pisana and Gergely to make yourselves available this afternoon and to present and to share. The question is, to Professor Humbert, I was wondering if you could share your perspectives on the value of shared decision making in your clinical practice and patient care, speaking from your personal clinical experience.


Thank you very much. It’s a very important question indeed, and of course, one size doesn’t fit all. I mean, you can have different approaches in different settings, and as both Pisana and Gergely said, there are very different approaches in different places, according to organization of care, socio-cultural differences, etc. That being said, I’m lucky enough to work in what we call a referral center, so we have some resources to develop shared decision making in a more professional way, and we try to help the whole network in France and in Europe now to use the instruments we try to develop.

So, the first service we have decided to offer to the patient and next of kin is specialized pulmonary hypertension nurses who are education nurses and are able to devote time with every single patient, irrespective of the education level, socio-cultural background etc. The nurses are in charge of education, and as you may know, some treatments are more difficult than others to be administered, some are given by inhalation, some are intravenous or subcutaneous treatments, etc., so they deserve a lot of attention, explanations and time.

On top of that, we have psychologists who are not medical doctors but who are trained to spend time and speak with a patient and their family. This is not for everybody, it’s for patients who wish to have that kind of support.

We also develop lay summaries, leaflets, and educational electronic resources. For example, the European guidelines are now available in lay language. It is a valuable document to initiate the discussion. We will have it available in different languages.

Last but not least, we have a strong and friendly relationship with patient associations, and the patient associations are the best possible supporters of good shared decision. In a few days, I will speak at a conference organized by the French Pulmonary Hypertension Association (HTaP France), and I will make a summary in lay language of the guidelines, as well as of research in pulmonary hypertension and new treatments, not only drugs but also interventions. This will be the occasion to develop ideas and concepts with patients and patient advocates on how to implement shared decision and support patient empowerment in my country.


Thanks very much actually the pulmonary hypertension community is blessed to have you as a senior expert and a senior clinician in that community I just wonder what happens in those countries and in those situations where not such an committed clinician is available. The Alliance for Pulmonary Hypertension has launched a knowledge sharing platform and my understanding of that platform is that really this best practice examples like yours should be shared with others and this webinar, by the way, will be on that platform very soon as a live stream so that all the listeners and all who couldn’t make it today can also benefit from it.

We have a question from Turkey: In situations where hospitals are overcrowded and patients do not have enough time to ask questions to doctors, what can be done. Pisana?


Patients can come prepared to their visits by organizing their thoughts and writing down their questions beforehand. This allows them to make the most of the limited time they have with the doctor. In the future, there may be the possibility of using apps or digital platforms where doctors can receive questions and information from patients outside of the appointment. This can facilitate communication and allow patients to have their queries addressed even if there are time constraints during in-person visits. Overall, while it may not be possible to completely overcome the time constraints and overcrowding issues in hospitals, these strategies can help improve the doctor-patient interaction and ensure that patients receive the information they need.


Gergely, anything to add here from your end?

I think it’s very important to mention preparation, as Pisana highlighted. We usually suggest having some notes on the patient’s side because it often happens that you leave the doctor and realize you forgot to ask the most important question. Having notes can be really useful, and there are plenty of applications patients can use for this purpose. It’s not like an exam, but it’s important to be focused and have advanced questions that you want answers to. This way, you can save time with your treating physicians and get the answers you’re looking for in a limited time.

Additionally, as Mark already mentioned, nurses are playing an increasingly important role in the treatment of patients. However, there are certain questions that should be directed to physicians rather than nurses. In some cases, specialized nurses may be able to address specific questions and they might have more time available compared to our busy physician partners.


There is another question regarding the relation between a specialist center and a field cardiologist. “After my pulmonary hypertension diagnosis, I informed my cardiologist that I was seeking a second opinion at a specialist center, and he was offended. It should be part of a patient’s rights to be well informed. What role do you think cultural aspects play in shared decision-making?” This question is directed to Professor Humbert.


It’s a very good point once again. Nobody should feel offended. I ask my colleagues on a daily basis for their opinions and second opinions are always valuable. Knowledge on pulmonary hypertension is not universally available, so we do our best with guidelines and we also develop summaries for family doctors and local specialists. In pulmonary vascular disease centers, we have regular multidisciplinary meetings where people from different backgrounds, including medical doctors, surgeons, radiologists, nurses, psychologists, and social workers, share their insights on specific cases. In fact, we always seek other opinions in order to give the best possible care to all patients.

If a doctor is offended because a patient seeks external recommendations, it’s a problem. Anyone should be able to have different opinions. We seek multiple opinions when it comes to car insurance, so why not when it concerns our own health? In my opinion, every patient should have multiple opinions, but in the end, there should be one recommendation for management and follow-up. There are many roads that lead to Rome, and sometimes different initial approaches can be taken. What matters is having multidisciplinary decision-making, shared information, and patient empowerment. Some patients may wish to have some time before considering a more aggressive management approach, and we accept that. It’s an interesting question, and I’m sure that cultural factors play a role. I feel that Pisana may have more to say.


I agree with everything you say Marc. I come from a country, Italy, where there is still a rather traditional view of medicine, so incidents like the one mentioned may not be uncommon. This traditional view, where doctors are seen as almost god-like figures and not to be questioned, is more prevalent among the older generation. However, I believe that this is changing, especially with the younger generation.


It is mentioned in the chat that in Turkey doctors are seen as gods, and it is questioned how doctors could be expected to value the patient’s opinion. This is seen as a cultural perspective, not limited to Turkey.

Another question is raised about the term “pulmonary hypertension” and how both patients and caregivers may struggle to accept this condition despite medical advice. The term “hypertension” in the disease name can further strengthen their resistance in acknowledging the situation, particularly among caregivers who may encounter the term for the first time.


Naming something is always difficult, and pulmonary hypertension is not a disease per se; it’s an umbrella term with many subcategories of diseases. Our role is to raise awareness, improve education, and engage as a community with patients, families, doctors, expert doctors, referral centers. Naming a condition is always needed, and I don’t see a major problem with the term “pulmonary hypertension.” It says what it is: hypertension in the pulmonary circulation. Then you must classify, evaluate severity and propose a management. That’s where expertise is needed, and where patient empowerment is important. The patient should understand and be able to partner with the doctor, where both improve each other’s knowledge. I’ve learned a lot from patients. The word “pulmonary hypertension” has never been a problem for me. There are worse names, like “Doctor X disease,” which doesn’t mean anything. Pulmonary hypertension describes a factual circumstance with many conditions leading to it. That’s where powerful patients and doctors come in. When you are powerful, you don’t fight; you play together. That’s a good segue into Gergely When you’re powerful, you need to be empowered.


That’s true but let me reflect on this a bit because we know that once it comes to hypertension for others it’s really not the pulmonary one but the very common disease and in some cases, it might generate some misunderstanding from the general population. To obviously focus on WHO Group 1, but rather to this rare disease areas and rare disease patients which might be a little bit misleading and difficult to communicate to the wider community.

I can also recall when we were talking about the ERS statement on CTEPH and we spent I think hours then. We can say that when it is CTEPH without PH, it is CTED, and so on. So, it’s always very difficult and challenging to find an appropriate terminology, and I think it would not be appropriate to change at this phase because probably some decades ago it might have the option to say some other name for this. But otherwise, I think that it’s very well advanced. Thanks for physician partners and all the basic research which was put in and also our pharmaceutical partners who were really engaged and devoted to this disease. So, it’s a very long route and road behind us, so I would not say that it would be wise to change or rephrase even the name of this disease. However, we need to flag that for raising awareness, as you mentioned Marc, and in some cases when you are advocating as a patient representative, sometimes it’s very difficult and you need to step back a little bit and provide some more background because of the reference to the general hypertension.


We have another question regarding the language used by doctors to talk about pulmonary hypertension and the potentially very grim prognosis.


That is, of course, very sensitive and it needs empathy. It should always also include at least some elements of hope. Actually, the need for empathic and sensitive communication on the part of healthcare professionals is mentioned in the guidelines in a number of sections, and this is also extremely important because language makes a big difference. It’s always important to use correct language but that also leaves a little bit of hope. I mean, there are ways of saying even bad news in a way that leaves hope because hope is what keeps patients going, and you should never kill that.


Yes, I cannot agree more. I mean, there is always hope in that field, and many of us around the table are good examples. So, always hope.


Yes, I was diagnosed with idiopathic pulmonary hypertension 35 years ago when there were no treatments and given about three years to live, and it’s 35 now. So, that’s what hope does. And a positive mindset. We haven’t talked about this but it is a key topic.


We are coming close to the planned end of this session; one final question: Are there any situations in which shared decision making is not possible with patients?


That has been, I think, already discussed briefly. Sometimes, when you have an urgent decision to make, of course, we inform as much as we can, but there are some life-saving approaches which necessitate urgent reactions. However, we always try. I mean, we are a team, and somebody will speak with the family, with the patient if possible. Communication can be extremely difficult in very young kids or in elderly people, but my ambition would be to always have time for shared decision making, and the exceptions should be very, very limited.


Pisana, you are a driving force behind the knowledge sharing platform. How will the knowledge sharing platform help to empower patients for shared decision making?


The aim of the knowledge sharing platform is to have a centralized hub where information from all over the world, in different formats and languages, can be accessed by anybody. So, again, it’s about the role of information and how it ultimately empowers patients. That’s the idea, and we’re only just starting now, but we have had very good feedback from the community. It will be a permanent work in progress, evolving with contributions from the community. This is also a call to action to send your contributions, take part in discussions, join our webinars, and share knowledge. It’s a global platform for the entire pulmonary hypertension community.


Thank you very much for joining us this afternoon. I hope you enjoyed this webinar. The next webinar follows on July 27th. Thanks very much for listening, and goodbye.

You can also download the transcript by clicking on the downpointing arrow in the block just below.

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