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 »

Defining “patient engagement” and distinguishing between individual empowerment and systemic partnership and advocacy, Sara Riggae, May 20 2025

Sarah Riggae is a researcher and educator who suffers from Parkinson’s disease,  In a recent article on her blog she defines what is meant by “patient engagement” and distinguishes between “primary” and “secondary” engagement.  Short summary: Primary Patient Engagement focuses on individual patient empowerment in their own healthcare journey. This includes: It’s essentially about patients having

Defining “patient engagement” and distinguishing between individual empowerment and systemic partnership and advocacy, Sara Riggae, May 20 2025 Read Post »

Video recording of the European Respiratory Society (ERS) Vision Live panel discussion titled “Review of the World Symposium on PH”, September 2, 2024 now available

The video recording of the European Respiratory Society (ERS) Vision Live panel discussion titled “Review of the World Symposium on Pulmonary Hypertension”, which took place on 2 September, 2024, in now available online on the ERS Respiratory Channel at this link Expert panellists Marc Humbert, Anton Vonk Noordegraaf, Ulrich Silvia, Isabel BLANCO VICH and Louise Bouman

Video recording of the European Respiratory Society (ERS) Vision Live panel discussion titled “Review of the World Symposium on PH”, September 2, 2024 now available Read Post »

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 »

“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 »

“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 »

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 »

On May 12 Team PHenomenal Hope announced its inaugural symposium, PHenomenal Hope 2023: Knowledge, Research & Advocacy in Pulmonary Hypertension, due to take place in Boston on December 15, 2023

Team PHenomenal Hope, a US national nonprofit advocacy organization for pulmonary hyeprtrension, proudly unveiled its inaugural symposium, PHenomenal Hope 2023: Knowledge, Research & Advocacy in pulmonary hypertension on May 12, 2023. The symposium will be held on Friday, December 15, 2023, in Boston, Massachusetts, USA Experts in the field are invited to share original research by August

On May 12 Team PHenomenal Hope announced its inaugural symposium, PHenomenal Hope 2023: Knowledge, Research & Advocacy in Pulmonary Hypertension, due to take place in Boston on December 15, 2023 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 »

“Health Literacy and Shared Decision-making: Exploring the Relationship to Enable Meaningful Patient Engagement in Healthcare”, Journal of General Internal Medicine

The authors of a study titled “Health Literacy and Shared Decision-making: Exploring the Relationship to Enable Meaningful Patient Engagement in Healthcare” presents an integrated model to strengthen and sustain patient engagement in health care by drawing on the strengths of both concepts. This includes addressing patients’ skills and capacities, they say, alongside modifications to written

“Health Literacy and Shared Decision-making: Exploring the Relationship to Enable Meaningful Patient Engagement in Healthcare”, Journal of General Internal Medicine Read Post »

Manifesto of the “Society for Participatory Medicine”, a non profit organisation promoting information sharing among patients, caregivers, and healthcare professionals

“Participatory Medicine” is a movement in which patients and health professionals actively collaborate and encourage one another as full partners in healthcare. The Society for Participatory Medicine is a not-for-profit organisation devoted to promoting the practice of participatory medicine, which enables collaborative communication and information sharing among patients, caregivers, and healthcare professionals. The Manifesto of

Manifesto of the “Society for Participatory Medicine”, a non profit organisation promoting information sharing among patients, caregivers, and healthcare professionals Read Post »

“Patient Design: The Importance of Including Patients in Designing Health Care”, Journal of Medical Internet Research

In this interesting article titled “Patient Design: The Importance of Including Patients in Designing Health Care”, the authors describe the paradigm shift that has taken place with the rise of internet from the traditional view of medicine, where doctors had little idea what the patient’s problem really was and “only doctors could know what was

“Patient Design: The Importance of Including Patients in Designing Health Care”, Journal of Medical Internet Research Read Post »

In his speech at the CPLF, French Language Pulmonology Congress, Prof. Marc Humbert highlights the importance of expert center–patient association partnerships

The Congrès de Pneumologie de Langue Française (CPLF) is the 3rd largest world pulmonology congress, after the ATS (American Thoracic Society) and the ERS (European Respiratory Society). This year it was held from 27 to 29 January 2023 in the city of Marseille. Prof. Marc HUMBERT, President of the European Respiratory Society, coordinator of RespiFIL,

In his speech at the CPLF, French Language Pulmonology Congress, Prof. Marc Humbert highlights the importance of expert center–patient association partnerships 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 »

June 9, 2022: Patient engagement in drug development, a live symposium organised by admedicum

On June 9th 2022, patient engagement experts at admedicum organized a live event in collaboration with HollandBIO and INSMED Pharmaceuticals, Inc. in Utrecht, with over 70 attendees and distinguished speakers from patient organisations, healthcare, regulatory and industry. The theme was “Patient engagement in 2030: how can patient engagement contribute towards building a new ecosystem for

June 9, 2022: Patient engagement in drug development, a live symposium organised by admedicum 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 »

Patient engagement and self-management in pulmonary arterial hypertension, European Respiratory Review

Patient engagement and self-management in pulmonary arterial hypertension”, European Respiratory Review 2016 25: 399-407, Article by Jytte Graarup, Pisana Ferrari, Luke S. Howard Abstract: Improved care in pulmonary arterial hypertension has led to increased longevity for patients, with a paralleled evolution in the nature of their needs. There is more focus on the impact of

Patient engagement and self-management in pulmonary arterial hypertension, European Respiratory Review Read Post »

“Physicians’ and patients’ expectations of therapies for pulmonary arterial hypertension: where do they meet?”, European Respiratory Review, December 1, 2014

An article titled “Physicians’ and patients’ expectations of therapies for pulmonary arterial hypertension: where do they meet?”, published in the European Respiratory Review, the authors say that improved care in pulmonary arterial hypertension has led to increased longevity for patients, with a paralleled evolution in the nature of their needs. There is more focus on

“Physicians’ and patients’ expectations of therapies for pulmonary arterial hypertension: where do they meet?”, European Respiratory Review, December 1, 2014 Read Post »

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