The new US Food and Drug Administration (FDA)’s guidance paper on incorporating voluntary patient preference information over the total product cycle, and what It means for patient organisations, March 30, 2026

Jan Geissler, Founder and CEO of Patvocates, a think tank, consultancy and social enterprise on patient advocacy and patient engagement in research, has analysed the Food and Drug Administration (FDA)’s newly issued guidance paper titled “Incorporating Voluntary Patient Preference Information over the Total Product Life Cycle Guidance for Industry, Food and Drug Administration Staff, and […]

The new US Food and Drug Administration (FDA)’s guidance paper on incorporating voluntary patient preference information over the total product cycle, and what It means for patient organisations, March 30, 2026 Read Post »

Telemedicine trends post Covid-19, Journal of Internal General Medicine, February 11, 2026

A large retrospective cohort study analyzed outpatient visits across five hospitals within the University of Pennsylvania Health System (Penn Medicine) from January 1, 2019, to September 30, 2024. The study included 46,149,734 visits among 2,248,341 patients.  Telemedicine surged from 1% of visits pre-pandemic to 17% in April 2020, before stabilising at 4-6% from 2022 onwards.

Telemedicine trends post Covid-19, Journal of Internal General Medicine, February 11, 2026 Read Post »

Assessing the feasibility of using smartphone data to identify risk of idiopathic pulmonary arterial hypertension, NPJ Vascular Health, March 25, 2026

A UK pilot study explored whether physical activity data from wearable devices and a smartphone app (My Heart Counts) could help detect idiopathic pulmonary arterial hypertension (IPAH) earlier, before formal diagnosis. Analysing up to eight years of real-world activity and heart rate data from 109 participants, including patients with idiopathic pulmonary arterial hypertension, disease controls,

Assessing the feasibility of using smartphone data to identify risk of idiopathic pulmonary arterial hypertension, NPJ Vascular Health, March 25, 2026 Read Post »

“Making the most of remote appointments”, the UK Pulmonary Hypertension Association’s free information material of the month

The UK Pulmonary Hypertension Association’s free form has been designed to help patients prepare for remote medical appointments. Completing it it beforehand can help make the most of the visits. Download the form at this link on the PHA UK website

“Making the most of remote appointments”, the UK Pulmonary Hypertension Association’s free information material of the month Read Post »

Telehealth in rural areas: Bridging the gaps through policy drivers, Intelligent Hospital, December 2025 issue

In an article published in the December 2025 issue of Intelligent Hospital on the challenges of telehealth adoption in rural communities, the authors examine why telehealth uptake remains limited outside urban areas despite its growing role in modern healthcare. The study explains that although technology has transformed health services by improving clinical capabilities and patient

Telehealth in rural areas: Bridging the gaps through policy drivers, Intelligent Hospital, December 2025 issue Read Post »

Study provides proof-of-concept that fully automated, algorithm-driven tacrolimus dosing can improve therapeutic drug monitoring in real-world clinical practice, Clinical Pharmacology and Therapeutics, October 11, 2025

Tacrolimus therapeutic drug monitoring is challenging due to high inter- and intra-patient variability. A prospective randomized controlled trial was conducted by researchers at the University Hospital in Leuven, Belgium, on 293 de novo kidney transplant recipients during the first 14 days post-transplant. A fully automated Model-informed precision dosing (MIPD) application (1) was integrated into the

Study provides proof-of-concept that fully automated, algorithm-driven tacrolimus dosing can improve therapeutic drug monitoring in real-world clinical practice, Clinical Pharmacology and Therapeutics, October 11, 2025 Read Post »

Shaping the Future of Digital Health Technology (DHT) Assessment, Journal of Market Access & Health Policy, September 4, 2025

A 2025 study published in the Journal of Market Access & Health Policy explores the evolving role of digital health technologies in shaping patient experiences and healthcare delivery. The authors used a mixed-methods approach including a survey of 20 Digital Health Technology developers, and qualitative research with 29 industry representatives from startups to multinational companies

Shaping the Future of Digital Health Technology (DHT) Assessment, Journal of Market Access & Health Policy, September 4, 2025 Read Post »

Making the case for advancing patient authorship and collaboration in peer-reviewed publications, Jan Geissler et Al., The Patient, July 2, 2025

Jan Geissler is the Founder and CEO of Patvocates, a consultancy and think tank on patient advocacy and patient engagement based in Riemerling, Germany. In an article he co-authored for the Springer Nature journal “The Patient” Geissler and his colleagues argue that meaningful patient involvement in healthcare research and publishing can bridge significant gaps between

Making the case for advancing patient authorship and collaboration in peer-reviewed publications, Jan Geissler et Al., The Patient, July 2, 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 »

Seven Actions Towards Advancing Patient Authorship and Collaboration in Peer-Reviewed Publications, The Patient, July 2, 2025

Jan Geissler, Founder and CEO of Patvocates, is co-author of an article titled “Seven Actions Towards Advancing Patient Authorship and Collaboration in Peer-Reviewed Publications” published on July.2, 2025 on The Patient. In a post for LinkedIn Jan says that patients and patient advocates are often missing from the author lists of scientific publications, even if

Seven Actions Towards Advancing Patient Authorship and Collaboration in Peer-Reviewed Publications, The Patient, July 2, 2025 Read Post »

Computer modeling used in study to simulate long-term mortality/morbidity in patients with pulmonary arterial hypertension If sotatercept Is delayed, Advances in Therapy, June 17, 2025

Researchers used computer modeling to compare immediate versus delayed (2-year) treatment with sotatercept, a new pulmonary arterial hypertension medication, to predict lifetime outcomes. Study Method: Building on the findings of the phase 3 STELLAR trial on sotatercept the authors of the study refer to a population health model which was recently published assessing the long-term

Computer modeling used in study to simulate long-term mortality/morbidity in patients with pulmonary arterial hypertension If sotatercept Is delayed, Advances in Therapy, June 17, 2025 Read Post »

Artificial intelligence applied to chest X-rays may have the potential to detect pulmonary hypertension associated with congenital heart disease (PAH-CHD), CHEST Journal, June 18, 2025

Pulmonary hypertension (PH) is hard to diagnose, especially in places with limited medical resources, but catching it early is crucial for treatment. A group of researchers from China conducted a retrospective cohort study with 4,576 patients, including 2,288 pulmonary hypertension cases, who underwent chest X-rays (CXR) followed by right heart catheterization (RHC) or transthoracic echocardiography

Artificial intelligence applied to chest X-rays may have the potential to detect pulmonary hypertension associated with congenital heart disease (PAH-CHD), CHEST Journal, June 18, 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 »

Physical Activity, Sleep, and Quality of Life in Pulmonary Arterial Hypertension: Novel Insights From Wearable Devices, Pulmonary Circulation, April 16, 2025

A study published in Pulmonary Circulation on April 16, 2025 investigated whether Fitbit wearable devices can provide meaningful clinical information about activity and sleep patterns in pulmonary arterial hypertension (PAH) patients. A total of 110 participants completed the 12-week baseline monitoring period. The cohort was median age 52.7 years (IQR: 40.9–60.5), female predominant (84% female),

Physical Activity, Sleep, and Quality of Life in Pulmonary Arterial Hypertension: Novel Insights From Wearable Devices, Pulmonary Circulation, April 16, 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 »

The Health Policy Partnership teams up with a multidisciplinary group of international experts to develop a policy toolkit for pulmonary arterial hypertension

The The Health Policy Partnership, a UK-based specialist health policy consultancy. convened a multidisciplinary group of international experts – consisting of pulmonary arterial hypertension patient advocates, cardiologists and pulmonologists – to support the development of a range of advocacy resources. The expert steering committee includes Dr Pilar Escribano Prof. Marc Humbert, Prof Nicholas Kolaitis, Prof

The Health Policy Partnership teams up with a multidisciplinary group of international experts to develop a policy toolkit for pulmonary arterial hypertension Read Post »

Deep learning model outperforms echocardiography in identifying pulmonary hypertension, CHEST, October 24, 2024

A new multimodal fusion model (MMF-PH) has outperformed transthoracic echocardiography (TTE) in accurately diagnosing pulmonary hypertension (PH) and identifying its subtypes, as presented at the CHEST Annual Meeting in Boston from 6-9 October. By integrating data from demographics, chest X-rays, electrocardiogram, and transthoracic echocardiography, this model reduces the need for invasive right heart catheterization. In

Deep learning model outperforms echocardiography in identifying pulmonary hypertension, CHEST, October 24, 2024 Read Post »

The Rise of the “Expert” Patient: Opportunities and Challenges in Democratizing Drug Development

For many years, drug development has lagged behind healthcare in engaging patients. Recently, however, the field has shifted toward more active patient involvement, recognizing the value of patient insights both for democratizing drug creation and enhancing innovation. A recent article published in “Science is Culture” analyzes the potential and challenges of involving patients in drug

The Rise of the “Expert” Patient: Opportunities and Challenges in Democratizing Drug Development Read Post »

From Dr. Google to Dr. ChatGPT: Evaluating the Credibility of ChatGPT for Pulmonary Arterial Hypertension Information

Patients worldwide are increasingly switching from Dr. Google to Dr. Chat GPT. A recent article titled “Trustworthiness, Value, Danger, and Readability of ChatGPT-Generated Responses to Health Questions Related to Pulmonary Arterial Hypertension”, published in the Cureus Journal of Medical Science on October 14, 2024, aimed to determine how well ChatGPT could accurately and consistently respond

From Dr. Google to Dr. ChatGPT: Evaluating the Credibility of ChatGPT for Pulmonary Arterial Hypertension Information Read Post »

The European Lung Foundation (ELF)’s 2023 Annual Report highlights its ongoing efforts to to collaborate with patients, patient organisations, healthcare professionals and the public

The Alliance for Pulmonary Hypertension is a proud member of the European Lung Foundation (ELF) Patient Organisation Network and is represented in the European Lung Foundation Pulmonary Hypertension Patient Advisory Group (PH PAG). The European Lung Foundation Patient Advisory Groups and working groups are made up of people who have an interest in a particular

The European Lung Foundation (ELF)’s 2023 Annual Report highlights its ongoing efforts to to collaborate with patients, patient organisations, healthcare professionals and the public Read Post »

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