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 […]
Strengthen your credibility as a health advocate New guide Being a patient advocate is not just about sharing your story – it’s about being taken seriously as an equal partner. This guide provides practical advice on how to strengthen your credibility and stand stronger in your encounters with healthcare professionals, decision-makers and organisations. Why is […]
What is a clinical trial? Hmm… What is a clinical trial? A clinical trial is an important form of research where new treatments, drugs or medical devices are tested to ensure they work and are safe to use. Clinical trials help develop new options for patients and improve the future of healthcare. Download our simple […]
Clinic or sofa? Patients prefer blood sampling at home How do patients prefer to have their blood samples taken – at the clinic or at home on the sofa? This question was posed by the independent, non-profit group PCSIG in a clinical study testing a new and simple method of blood sampling. The method […]
6-Month Report A strong Start for PiCC United 6-Month Report – A Strong Start for PiCC United We have reached an important milestone: the first six months of PiCC United! In our new transparency report, we share how we’ve gone from idea to action – and how we’re already making a difference for patients, carers […]
