Including the patient voice into pulmonary arterial hypertension (PAH) risk assessment evaluation, a symposium organised by MSD at the ERS Annual Congress, Amsterdam, September 29, 2025

Traditional risk models for pulmonary arterials hypertension rely heavily on objective measures. While essential, they often miss the patient’s lived experience—symptoms, quality-of-life challenges, and life-context factors that shape treatment decisions. At the symposium organised on 29 September 2025 by MSD at the European Respiratory Society Annual Congress in Amsterdam, on the topic of “The Value […]

Including the patient voice into pulmonary arterial hypertension (PAH) risk assessment evaluation, a symposium organised by MSD at the ERS Annual Congress, Amsterdam, September 29, 2025 Read Post »

A review of the book “The Patient Priority”, authored by Stefan Larsson, Jennifer Clawson and Joshua Kellar, August 2025

Steven Gijssels is Chair of the Patient Expert Center in Belgium. He has recently published a review of the book “The Patient Priority” by Stefan Larsson, Jennifer Clawson and Joshua Kellar, three Boston Consulting Group consultants. The book calls for integrated care, more efficient reimbursement models, and outcome-focused evaluations of healthcare interventions. Tracking patient outcomes

A review of the book “The Patient Priority”, authored by Stefan Larsson, Jennifer Clawson and Joshua Kellar, August 2025 Read Post »

“First five minutes”: building patient trust, a PHAWARE GLOBAL podcast, July 22, 2025 

In episode 530 of the phaware® podcast Drs. Victor Test, Deborah Levine and Rodolfo Estrada discuss CHEST’s First 5 Minutes® program, which helps medical professionals build the skills that lead to a positive relationship with patients from the get-go, creating trust and developing empathy to build rapid rapport and communicate with patients. The goal is to

“First five minutes”: building patient trust, a PHAWARE GLOBAL podcast, July 22, 2025  Read Post »

The Role of Telehealth in Pulmonary Arterial Hypertension (PAH) Management: Benefits, Barriers, and Solutions, Pulmonary Circulation, June 9, 2025

The use of remote healthcare services expanded significantly during the COVID-19 pandemic, promoting distant patient care management. Telehealth may be effective in managing patients with pulmonary arterial hypertension (PAH), due to its use in the management of other chronic diseases. However, evidence for telehealth use in pulmonary arterial hypertension is limited to a few small

The Role of Telehealth in Pulmonary Arterial Hypertension (PAH) Management: Benefits, Barriers, and Solutions, Pulmonary Circulation, June 9, 2025 Read Post »

The importance of respectful language to enhance care, Joint Statement by the Association of Cardiovascular Nurses & Allied Professions (ACNAP), the ESC Patient Forum & the ESC Advocacy Committee, European Journal of Cardiovascular Nursing, April 11, 2025

This statement highlights the vital role of respectful and inclusive language in cardiovascular care. It emphasizes that the way healthcare professionals communicate can significantly influence patient experiences, trust, engagement, treatment adherence, and overall health outcomes. Language that is stigmatizing, dismissive, or judgmental – whether international or unconscious – can cause harm, reinforce inequalities, and discourage

The importance of respectful language to enhance care, Joint Statement by the Association of Cardiovascular Nurses & Allied Professions (ACNAP), the ESC Patient Forum & the ESC Advocacy Committee, European Journal of Cardiovascular Nursing, April 11, 2025 Read Post »

Effective Communication Key to Improving Medication Adherence in Pulmonary Arterial Hypertension, findings of the PERSIST Study, Pulmonary Circulation

A recent study published in Pulmonary Circulation highlights the vital role of proactive communication in improving medication persistence among individuals with pulmonary arterial hypertension. The study, titled PERSIST (Practices affEcting macitentan and selexipag patient persistence Rates utilizing pulmonary arterial hypertension clinical Site and patIent perSpecTives), surveyed 134 patients and 23 healthcare professionals across the United

Effective Communication Key to Improving Medication Adherence in Pulmonary Arterial Hypertension, findings of the PERSIST Study, Pulmonary Circulation Read Post »

Medication adherence in pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH), European Respiratory Review, September 2024

An article titled “Medication adherence, related factors and outcomes among patients with pulmonary arterial hypertension or chronic thromboembolic pulmonary hypertension: a systematic review”, was recently published in the European Respiratory Review. It investigates medication adherence (MA) in patients with pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH). The authors note that while it

Medication adherence in pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH), European Respiratory Review, September 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 »

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 »

“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 »

Narrative medicine: a medicine infused with respect for the narrative dimensions of illness and caregiving, Rita Charon

Rita Charon, MD, PhD, is widely recognised as the originator of the field of “Narrative Medicine”. “The effective practice of medicine requires narrative competence, that is, the ability to acknowledge, absorb, interpret, and act on the stories and plights of others,” Charon wrote in a 2001 article titled “Narrative Medicine: A Model for Empathy, Reflection,

Narrative medicine: a medicine infused with respect for the narrative dimensions of illness and caregiving, Rita Charon Read Post »

The AfPH’s first webinar on Partnering with Patients and Shared Decision-Making in Pulmonary hypertension care is on June 6, 16.30 CEST

Here are the links to join: If you wish to join all you need to do is go to any of these links at 4.30 pm CEST on June 6. LinkedIn https://www.linkedin.com/events/7062051293736898560/comments/ Facebook Live https://www.facebook.com/events/1015166536534693 YouTube https://www.youtube.com/watch?v=x6wJlY9Kz_o PH-KSP website https://ph-ksp.com/our-webinars/ The recording, slides and transcript will be made available shortly after the webinar. Translations of the transcript will be

The AfPH’s first webinar on Partnering with Patients and Shared Decision-Making in Pulmonary hypertension care is on June 6, 16.30 CEST Read Post »

“What’s the Role of Time in Shared Decision Making?”, AMA Journal of Ethics

In the abstract to this very interesting article titled “What’s the Role of Time in Shared Decision Making?”, the authors point out that while shared decision making (SDM) is a desirable process and outcome of patient-clinician relationships, time is often insufficient and represents a barrier to SDM. The authors explore alternative ways clinicians can think

“What’s the Role of Time in Shared Decision Making?”, AMA Journal of Ethics Read Post »

“Improving communication between healthcare providers and pulmonary arterial hypertension patients: a survey of patient preferences”, Pulmonary Circulation

Patient–health care provider (HCP) communication has long been identified as playing an essential role in medical care, say the authors of an article titled “Improving communication between healthcare providers and pulmonary arterial hypertension patients: a survey of patient preferences”, published in Pulmonary Hypertension. The objective of this study was to determine the words and phrases

“Improving communication between healthcare providers and pulmonary arterial hypertension patients: a survey of patient preferences”, Pulmonary Circulation Read Post »

“Shared decision making, shared care” is one of its the five key domains chosen by the European Society for Organ Transplant (ESOT) for its 2023 Congress

The European Society for Organ Transplant (ESOT)’s 2023 Congress, taking place in Athens, Greece, from September 17-20, has dedicated one of its five key domains to “SHARED DECISION MAKING, SHARED CARE”. The domain description reads as follows: “The delivery of healthcare is rapidly shifting towards a value-based system, driven by patients. We will focus on

“Shared decision making, shared care” is one of its the five key domains chosen by the European Society for Organ Transplant (ESOT) for its 2023 Congress Read Post »

“Building from patient experiences to deliver patient-focused healthcare systems in collaboration with patients”, Springer, July 19, 2022

As patients we are delighted to see that the importance and the added value of involving patients in health care decisions and policies is increasingly being recognised. In this very interesting article published on September 16, 2022, the authors note that the application of patient experience data to inform healthcare decisions is still an emerging

“Building from patient experiences to deliver patient-focused healthcare systems in collaboration with patients”, Springer, July 19, 2022 Read Post »

“Inspirer, s’exprimer”, a pulmonary arterial hypertension conversation kit to help patients communicate with doctors and with their loved ones, by HTaPFrance, the French pulmonary hypertension association

On the occasion of May 5, the Pulmonary Hypertension Awareness Day, in 2022, HTaPFrance released the French version of a “Pulmonary Hypertension conversation kit” developed by Janssen, as part of the PHuman project , in collaboration with pulmonary hypertension patient associations around the world. The aim is to help patients better understand the condition and

“Inspirer, s’exprimer”, a pulmonary arterial hypertension conversation kit to help patients communicate with doctors and with their loved ones, by HTaPFrance, the French pulmonary hypertension association Read Post »

“Realistic medicine” puts the person receiving health and social care at the centre of decisions made about their care

“Realistic medicine” puts the person receiving health and social care at the centre of decisions made about their care. The term Realistic Medicine was first introduced by Scotland’s Chief Medical Officer, Catherine Calderwood, in her annual report from 2016 and is being embedded across Scotland, championed by local and national clinical leaders. The Realistic Medicine

“Realistic medicine” puts the person receiving health and social care at the centre of decisions made about their care Read Post »

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