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 »

The European Patients’ Forum (EPF) “Advocacy 101” offers a tailored training course to help build a solid base of knowledge and understanding of patient advocacy

The European Patients’ Forum (EPF), has recently launched a training course for young patient advocates, “Advocacy 101”. The EPF is an umbrella organisation of patient organisations across Europe and across disease-areas. “Advocacy 101” is a free-of-charge, tailored training course built to help gain a solid base of knowledge and understanding of patient advocacy. Some of the key questions

The European Patients’ Forum (EPF) “Advocacy 101” offers a tailored training course to help build a solid base of knowledge and understanding of patient advocacy 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 »

Pisana Ferrari and Gergely Meszaros discuss their contribution to the new ESC/ERS pulmonary hypertension guidelines in an interview for the Belgian Flemish Association’s January 2023 newsletter

The Belgian Flemish Association, Pulmonale hypertentie vzw, has published an interview with patient advocates Gergely Meszaros (PHA Europe) and Pisana Ferrari (AIPI, Italian Pulmonary Hypertension Association, Italy) in the latest edition of their magazine “ADEMLOS”. In this interview Gergely and Pisana discuss their contribution to the new ESC/ERS pulmonary hypertension guidelines, and in particular: The

Pisana Ferrari and Gergely Meszaros discuss their contribution to the new ESC/ERS pulmonary hypertension guidelines in an interview for the Belgian Flemish Association’s January 2023 newsletter Read Post »

Youth involvement in patient organisations, an online survey by the European Patients Forum (EPF)

With this survey the EPF Youth Group (YG) of the European Patients Forum (EPF) aims to collect key information on the importance and impact of young patient’s involvement in patient organisations. It is not always easy to involve young patients in patient organisations, as many of us who run patient associations well know. We hope this survey

Youth involvement in patient organisations, an online survey by the European Patients Forum (EPF) Read Post »

“Why patient empowerment should be at the heart of organ transplantation: a personal perspective”, by Pisana Ferrari, in Hospital Health Care Europe, October 18, 2022

The European Society for Organ Transplantation (ESOT) invited Pisana Ferrari to share her personal perspective as a lung transplant patient on the importance of patient engagement throughout the transplant journey (20+ years) and on why strengthening the relationship between the patient and the healthcare professional is so crucial in enhancing the transplant patient experience. The

“Why patient empowerment should be at the heart of organ transplantation: a personal perspective”, by Pisana Ferrari, in Hospital Health Care Europe, October 18, 2022 Read Post »

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

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 the disease on their day-to-day activities and quality of life, and a holistic approach is coming to the front of pulmonary arterial hypertension

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

“What’s new in the 2022 ESC/ERS clinical guidelines for pulmonary hypertension, and what it was like to be the first patient ever to be included in the guidelines Task Force”, by Pisana Ferrari

Clinical practice guidelines present relevant evidence to help health care professionals in making decisions about therapeutic options and include recommendations intended to optimise patient care. They are updated on a regular basis to take into account the latest evidence and practice. The European Society of Cardiology (ESC) and the European Respiratory Society (ERS) joint clinical

“What’s new in the 2022 ESC/ERS clinical guidelines for pulmonary hypertension, and what it was like to be the first patient ever to be included in the guidelines Task Force”, by Pisana Ferrari Read Post »

Dates for the European Rare Disease Organisation, EURORDIS, Summer School for Patient Advocates 2023 now announced: June 19-23, 2023, Barcelona

The EURORDIS Summer School on Medicines Research & Development consists of a one week of face-to-face training, held in June in Barcelona. Free e-learning modules are also available on demand. The EURORDIS Summer School aims to provide rare disease patient advocates with the knowledge and skills needed to become experts in medicines research and development.

Dates for the European Rare Disease Organisation, EURORDIS, Summer School for Patient Advocates 2023 now announced: June 19-23, 2023, Barcelona 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 »

“The Added Value of Patient Engagement in Early Dialogue at the European Medicines Agency (EMA): Scientific Advice as a Case Study”, Frontiers in Medicine

  ABSTRACT The European Medicines Agency provides Scientific Advice to medicines developers and patient input has been an integral part of this process for many years. As end users of medicines, patients bring their perspectives to many different processes along EMA’s regulatory pathway, complementing the scientific expertise. While the value of including patients has been

“The Added Value of Patient Engagement in Early Dialogue at the European Medicines Agency (EMA): Scientific Advice as a Case Study”, Frontiers in Medicine Read Post »

The European Medicines Agency (EMA) updates its engagement framework with patients, consumers and their organisations

The European Medicines Agency (EMA) engagement framework aims to Facilitate participation of patients and consumers in regulatory activities all along the entire lifecycle of medicines; Foster the development of guidance and methodologies to increase collection and use of relevant patient experience data in the context of regulatory decision making; Ensure that patients, consumers and their

The European Medicines Agency (EMA) updates its engagement framework with patients, consumers and their organisations Read Post »

What are the European Reference Networks (ERNs) and why it is important that the pulmonary hypertension community participate in its work

The European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe. They aim to facilitate discussion on complex on rare diseases and conditions that require highly specialised treatment, and concentrated knowledge and resources. The first ERNs were launched in 2017, involving more than 900 highly-specialised healthcare units from over 300 hospitals in 26

What are the European Reference Networks (ERNs) and why it is important that the pulmonary hypertension community participate in its work Read Post »

Patient group trainings at Beacon, a UK-based non-profit organisation for rare diseases

Beacon is a UK-based non-profit organisation that is building a united rare disease community with patient groups at its heart. Their patient group trainings aim to help these often small and voluntary organisations to form, grow, and professionalise. Their events and trainings also give patient groups the opportunity to connect and collaborate with others across

Patient group trainings at Beacon, a UK-based non-profit organisation for rare diseases 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 »

European Patients’ Academy on Therapeutic Innovation (EUPATI), a patient-led initiative to enhance knowledge of medicine R & D processes

The European Patients’ Academy on Therapeutic Innovation (EUPATI) is a patient-led partnership working across stakeholders to enhance patient engagement, registered as an independent non-profit Foundation in the Netherlands. It announced today an important milestone for their “Toolbox”: 5 million unique users since its launch in 2016. Explore the EUPATI Toolbox to learn more about medicine

European Patients’ Academy on Therapeutic Innovation (EUPATI), a patient-led initiative to enhance knowledge of medicine R & D processes 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 »

Patient input can be paramount in developing digital health products attending to their medical needs

The adoption of “patient design” is one of keys factors in the success of digital health companies according to Bertalan Meskó, MD, PhD, Director of The Medical Futurist Institute. In a recent article titled “Best Practices In Digital Health: 9 Keys To Build A Future-Ready Organisation”, he says that patients, who are the end-user of

Patient input can be paramount in developing digital health products attending to their medical needs Read Post »

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