Protecting Our Voice in the Work As patient advocates, many of us begin this work fueled by passion—by lived experience and a desire to create change. For some of us, that work is shaped by bringing multiple perspectives at once. For me, I am a Sickle Cell Warrior, a caregiver, a former pharmaceutical executive, a […]
What is patient engagement in research? Patient engagement in research means actively involving patients and carers in the planning, design, and execution of research projects. It ensures that research is aligned with real-world needs and experiences. Patient engagement in research is no longer a “nice to have” — it is becoming a fundamental requirement […]
Building Stronger Patient Voices – From Experience to Impact On March 21, the Philippine Alliance of Patient Organizations (PAPO) launched its Foundations of Patient Leadership & Advocacy Series — a timely and important initiative aimed at strengthening patient organizations from the ground up. At PiCC United, we often talk about lowering the barrier to […]
Spotlight Interview Caitlin and Clarinda, Founders of Not Just Patients At PiCC United, we are proud to feature an inspiring interview with Caitlin and Clarinda, the founders of the Not Just Patients podcast. We chose to highlight their voices because they represent a new generation of unique and influential patient advocates dedicated to advancing meaningful […]
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 […]
