Key insights from the “Patient Perspective” article in the World Symposium on Pulmonary Hypertension (WSPH) proceedings, European Respiratory Journal, August 29, 2024

The full proceedings of the World Symposium on Pulmonary Hypertension which was held in Barcelona 29.6-1.7, 2024, have now been published in the European Respiratory Journal at this link. The proceedings cover the work of the 15 task forces; Task Force n°1’s article is titled “Exploring the patient perspective in pulmonary hypertension” (see below for […]

Key insights from the “Patient Perspective” article in the World Symposium on Pulmonary Hypertension (WSPH) proceedings, European Respiratory Journal, August 29, 2024 Read Post »

For far too long, medicine has ignored the valuable insights that patients have into their own diseases. It is time to listen, “Aeon Psyche”, August 5, 2024

An article titled “Empowering patient research” which was recently published on the Aeon Psyche newsletter on August 5, 2024, discusses the challenges faced by patients with chronic illnesses and disabilities in the healthcare system, particularly in research and academia. The article advocates for the inclusion of patients as active participants in medical research, arguing that

For far too long, medicine has ignored the valuable insights that patients have into their own diseases. It is time to listen, “Aeon Psyche”, August 5, 2024 Read Post »

Impact of insurance restrictions on pulmonary arterial hypertension (PAH) therapies in the US, “Managed Healthcare Executive”, June 21, 2024

An article by Jared Kaltwasser, in Managed Healthcare executive in its latest issue, sheds light on the growing restrictions imposed by commercial insurers on treatments for pulmonary arterial hypertension. An examination of 17 major insurance plans from 2017 to 2022 showed a sharp increase in policies with at least one restriction, jumping from 38% to

Impact of insurance restrictions on pulmonary arterial hypertension (PAH) therapies in the US, “Managed Healthcare Executive”, June 21, 2024 Read Post »

Patients as teachers? A pilot experiment of patient-led online learning modules for HCPs in Canada proves the effectiveness of this approach, “BMC Medical Education”, May 10, 2024

A study titled “Patients as teachers: a within-subjects randomized pilot experiment of patient-led online learning modules for health professionals” was published on BMC Education on May 10, 2024. Medical education programs are increasingly including presentations by individuals with lived experiences. The authors of the article say that relying on a limited number of speakers may

Patients as teachers? A pilot experiment of patient-led online learning modules for HCPs in Canada proves the effectiveness of this approach, “BMC Medical Education”, May 10, 2024 Read Post »

April 7 is World Health Day 2024, celebrated annually by the World Health Organisation (WHO). This year’s theme is “My health, my right”

April 7 is the UN “World Health Day”. This date marks the anniversary of the founding of World Health Organization in 1948. Health is a human right: everyone, everywhere, should have access to quality health services. This year’s theme was chosen to champion the right of everyone, everywhere to have access to quality health services, education, and

April 7 is World Health Day 2024, celebrated annually by the World Health Organisation (WHO). This year’s theme is “My health, my right” Read Post »

Full transcripts of the Alliance for Pulmonary Hypertension’s 2023 webinars now available for in a format that can be translated into 40 languages

The full transcripts of the Alliance for Pulmonary Hypertension’s 2023 six webinars are now available! The transcripts encapsulate invaluable insights that continue to resonate with current trends and emerging issues, serving as a vital resource for our community. They are now in a format that can be translated into 40 languages, thanks to the embedded

Full transcripts of the Alliance for Pulmonary Hypertension’s 2023 webinars now available for in a format that can be translated into 40 languages Read Post »

Driving innovation and patient-centred care in pulmonary hypertension: the inspiring journey of Dr. Joanna Pepke-Zaba, March 28, 2024

Dr. Joanna Pepke-Zaba, renowned consultant respiratory physician at Royal Papworth Hospital, recently received a prestigious European Respiratory Society (ERS) lifetime achievement award, marking another milestone in her illustrious career. In an interview with Saša Janković, recently published on March 18, 2024 on “Hospital Health Care Europe”, Dr. Pepke-Zaba discusses her dedication to advancing research and

Driving innovation and patient-centred care in pulmonary hypertension: the inspiring journey of Dr. Joanna Pepke-Zaba, March 28, 2024 Read Post »

“Patient Involvement in Guidelines”, a webinar organised by ERKNet and EURORDIS, featuring Matt Bolz-Johnson as speaker, April 22, 2024

Clinical practice guidelines provide essential recommendations for diagnosing and treating medical conditions. In the realm of pulmonary hypertension a groundbreaking milestone has been achieved with the inclusion of two patient representatives, Pisana Ferrari and Gergely Meszaros JD, MSc, as members of the dedicated task force and co-authors of the new guidelines jointly developed by the European Society of Cardiology and the European Respiratory

“Patient Involvement in Guidelines”, a webinar organised by ERKNet and EURORDIS, featuring Matt Bolz-Johnson as speaker, April 22, 2024 Read Post »

Prof. Adam Torbicki explores access to care, Prof. Jean-Luc Vachiéry delves into drug development – watch the highlights from the PHA Europe Annual Conference online

Prof. Adam Torbicki’s presentation is titled “Access to care for pulmonary arterial hypertension and chronic thromboembolic pulmponary hypertension”. It can be viewed at this link on Vimeo (you need to register on Vimeo to see it) Prof. Jean-Luc Vachiéry’s presentation is titled “Drug development and clinical trials“. It can be viewed at this link on

Prof. Adam Torbicki explores access to care, Prof. Jean-Luc Vachiéry delves into drug development – watch the highlights from the PHA Europe Annual Conference online Read Post »

Why quality indicators for pulmonary hypertension care are important from a patient perspective, Pisana Ferrari

It was a great honour to be invited to speak at the ERN-LUNG webinar on quality indicators for adult pulmonary arterial hypertension care, which took place on December 8, 2023, where I was asked to explain why these are important from a patient perspective. The webinar referenced an article in the European Journal of Heart

Why quality indicators for pulmonary hypertension care are important from a patient perspective, Pisana Ferrari Read Post »

Recording of the December 8, 2023 ERN-LUNG webinar on quality Indicators for pulmonary arterial hypertension is available

On December the 8th 2023 the European Reference Network for Rare Lung Diseases (ERN-Lung) hosted a webinar titled “Quality Indicators in Healthcare, the example of Pulmonary Hypertension”. The webinar refers to the scientific paper on quality indicators published in the European Journal of Heart Failure, in connection with the publication of the 2022 European Society

Recording of the December 8, 2023 ERN-LUNG webinar on quality Indicators for pulmonary arterial hypertension is available Read Post »

Two part video series on Patient Reported Outcome Measures (PROMs): what they are and how to collect and use them, by Leem France

Les Entreprises du Médicament, Leem, is the French industry association which represents drug companies operating in France. During the course of November 2023 Leem organised a two-part video series on Patient Reported Outcome Measures. Round Table 1- 06/11/2023 – PROMs, PREMs, Patient Surveys: What are we talking about and for what purposes? Moderator: Dr. Thomas

Two part video series on Patient Reported Outcome Measures (PROMs): what they are and how to collect and use them, by Leem France Read Post »

A fresh booklet for those unfamiliar with European Reference Networks (ERNs) and their role in rare disease patient care, Novemebr 25, 2023

The Directorate-General for Health and Food Safety of the European Commission has just issued a new booklet on European Reference Networks (ERNs). European Reference Networks are virtual networks connecting healthcare providers, professionals and patient organisations across the European Union (EU) and Norway. The rationale behind their establishment is that no country alone has the knowledge

A fresh booklet for those unfamiliar with European Reference Networks (ERNs) and their role in rare disease patient care, Novemebr 25, 2023 Read Post »

Artificial intelligence could help restore the essential humaneness in medicine by providing the gift of time, The Lancet, October 21, 2023

In the age of artificial intelligence, chat bots and automated services, our quest for empathy becomes more pressing than ever. Counterintuitively, Dr. Eric J. Topal, an American cardiologist, scientist, and best selling author, claims that artificial intelligence has the potential to enhance empathy, particularly in the vital relationship between patients and clinicians. In a recent

Artificial intelligence could help restore the essential humaneness in medicine by providing the gift of time, The Lancet, October 21, 2023 Read Post »

“Patient partnership in cardiovascular clinical trials”, European Heart Journal

This paper, titled “”Patient partnership in cardiovascular clinical trials”, published in the European Heart Journal, assesses current initiatives and identifies opportunities for furthering meaningful patient involvement in cardiovascular clinical research. According to the authors, patients are fundamentally the ultimate beneficiaries of medical treatments, and their active engagement as contributors and decision-makers in the product development

“Patient partnership in cardiovascular clinical trials”, European Heart Journal Read Post »

Webinar on “Patient-Reported Outcome Measures and Their Role in Pulmonary Hypertension Care and Research”

Download the webinar slides here Learning objectives of the webinar Our goal is to empower individuals living with pulmonary hypertension and their families, equipping them with actionable insights and practical knowledge. Transcript NB. This transcript can be translated into your preferred language – use orange button at the bottom centre of this page to select

Webinar on “Patient-Reported Outcome Measures and Their Role in Pulmonary Hypertension Care and Research” Read Post »

Slides and recording of our webinar on “Patients as Partners and Shared Decision Making” -June 6, 2023

Download the webinar slides here Learning objectives of the webinar Our goal is to empower individuals living with pulmonary hypertension and their families, equipping them with actionable insights and practical knowledge. Transcript ARADIGM FOR PULMONARY HYPERTENSION CARE”, June 6, 2023 NB. This transcript can be translated into your preferred language – use orange button at

Slides and recording of our webinar on “Patients as Partners and Shared Decision Making” -June 6, 2023 Read Post »

The International Respiratory Coalition (IRC) launches it official Manifesto for Better Respiratory Health at its Summit on 26-27 June 2023

The International Respiratory Coalition (IRC) is a coalition of respiratory clinicians and professional societies, including the European Respiratory Society (ERS) and European Lung Foundation (ELF), patients and industry partners was launched in September 2021. The second IRC Summit took place in Lisbon, Portugal on 26–27 June 2023. The event was an important opportunity for representatives

The International Respiratory Coalition (IRC) launches it official Manifesto for Better Respiratory Health at its Summit on 26-27 June 2023 Read Post »

Sharing best practices on how to implement shared decision making and support patient empowerment: Prof. Marc Humbert, Head of the French Pulmonary Hypertension National Referral network

In our ongoing efforts to advance the understanding and treatment of pulmonary hypertension, the Pulmonary Hypertension Knowledge Sharing initiative places a strong emphasis on sharing best practices. We are deeply grateful to Prof. Marc Humbert for graciously accepting our invitation to shed light on the crucial topic of shared decision making and patient empowerment within

Sharing best practices on how to implement shared decision making and support patient empowerment: Prof. Marc Humbert, Head of the French Pulmonary Hypertension National Referral network Read Post »

“Narrative Medicine Teaches Doctors How to Listen to Patients’ Stories”, Eve Glasberg, Columbia University News, June 5, 2023

Eve Glasberg is the Director of Arts and Culture Communications at Columbia University, NY, NY. In a recent article for the Columbia University News, she writes about the growing field of “narrative medicine”, a discipline which is at the intersection of humanities, the arts, clinical practice, and health care justice, and aims to improve clinician-patient

“Narrative Medicine Teaches Doctors How to Listen to Patients’ Stories”, Eve Glasberg, Columbia University News, June 5, 2023 Read Post »

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