Northern Ireland, UKWelcome Home Heart Failure roundtable with patients, carers, and healthcare teams. Paris, FranceWelcome Home HCM roundtable with patients and clinicians. Strengthening Patient Communities Across Europe Across Europe, many people living with cardiovascular disease leave the hospital with more questions than answers. The moment of diagnosis can be overwhelming, and the journey that follows […]
Reinventing Healthcare Through Authentic Partnership The PFAnetwork is a community The PFAnetwork (a program of PFCCpartners) is a community of patients, family caregivers, and community leaders reinventing healthcare through authentic partnerships. Our diverse lived experiences shape healthcare policies, programs, and services that truly meet the needs of patients and families. Authentic partnership is the cornerstone […]
From Patient to Partner: Why PiCC United Is Working to Make Patient Involvement the Norm Knowledge + partnership + structure = better lives and fewer complications. This isn’t just an ambition. It’s a necessity. Today we know that the healthcare system can no longer function optimally if the patient is merely a passive […]
Building a better evidence base Modern healthcare is based on the idea of “evidence-based medicine”. Clinicians have access to huge databases of medical research. Their training and professional development are informed by research, and their clinical guidelines, practice protocols and diagnostic aids are evidence-based. Conferences and journals help busy practitioners keep abreast of a non-stop […]
An Advocate for Patient Inclusion in Research Overcoming Structural Obstacles to Patient Involvement in Research Patient advocates have learned to manage the obstacles faced when trying to engage in research. Some challenges faced are meetings held in buildings which are not designed for accessibility, or not being compensated for our knowledge, and even overcoming researcher […]
What Is the EU Biotech Act – and Why Does It Matter? The EU Biotech Act is a major new legislative proposal from the European Commission – the part of the EU that proposes new rules for the entire EU area. The aim is to make biotechnology stronger and more competitive in Europe. This means that the EU wants to create new rules and frameworks so that research, development and production of biotechnology products (e.g. medicines, treatments and advanced technologies) can happen faster, more easily and in Europe instead of in other countries. Biotechnology is […]
Patient Involvement in Health Technology Assessment New international book on patient involvement has just been published The long-awaited second edition of the book Patient Involvement in Health Technology Assessment has now been published – and it is more relevant than ever. The book is an international standard work that focuses on meaningful patient involvement in […]
Patients’ voices are being taken The voice of patients is on the move – and this time, the system is moving with it. New international guidelines from the EMA and ICH mark an important shift in how patients’ experiences and preferences are understood and used in drug development and health decisions. What was previously often […]
Our Journey in the Asia-Pacific A Powerful Story of Collaboration in the Asia-Pacific Region We are proud to share an inspiring contribution from Paul Mendoza, President of Psoriasis Philippines and PsorAsia+Pacific.In this personal reflection, Paul describes how patient communities across low- and middle-income countries in the Asia-Pacific region are joining forces to overcome shared challenges—from […]
From lived experience to system change News from our partner Mandy C. Dalyfrom Irish Neonatal Health Alliance (INHA) shares why patient expertise belongs in research, policy, regulation, and healthcare decision-making. When I first stepped into the world of patient advocacy, I never imagined that my journey would one day include conversations with regulators, global […]
