Safe care for life requires patients as partners

Every year on 17 September, World Patient Safety Day asks health systems to confront avoidable harm. In 2026, the campaign focuses on safe care for people living with noncommunicable diseases under the slogan “Safe care for life!”

The focus is especially relevant to the patient community. People living with long-term conditions often rely on care over many years and across different settings. Each consultation, medicine, device, test and transition between services can improve health, but each can also introduce risk. Patients often see problems that institutions or professionals may miss. They know where information is lost, instructions are unclear, devices do not fit daily life or treatment becomes unmanageable. Patient organisations bring these experiences together and turn them into evidence for better policy, research and practice. 

Safer policy for medicines and medical devices 

For millions of people, medical devices are essential to daily life and safe care. Yet those who rely on them remain underrepresented in decisions about how these technologies are designed, regulated and monitored. EPF therefore combines policy advocacy with practical support for patient organisations. 

In March 2026, EPF brought together patient representatives from across Europe for a capacity-building workshop in Brussels. The workshop covered the evolving MDR and IVDR framework, patient involvement in device development and governance, post-market surveillance and safety reporting, and the use of tools such as EUDAMED. 

EPF also engages with the Medical Device Coordination Group and contributes to discussions on the Medical Devices Regulation and In Vitro Diagnostic Medical Devices Regulation. In its response to the European Commission’s 2026 proposal, EPF called for strong oversight throughout the device lifecycle, better coordinated responses to safety events, accessible information through EUDAMED, and structured patient involvement in regulatory decisions. Simplifying the framework must never weaken safety, transparency or post-market surveillance. 

EPF’s patient safety work also addresses antimicrobial resistance (AMR). People living with chronic conditions can be particularly exposed because they often spend more time in healthcare settings and may need procedures involving antibiotics. 

EPF advocates for ambitious action on AMR, provides accessible information and supports patient organisations engaging at national level. Through the European Partnership on One Health Antimicrobial Resistance, EPF also strengthens patient and public involvement in AMR research and policy, helping ensure that research priorities reflect the needs of patients and communities. 

Safety also depends on the quality and relevance of clinical evidence. This is reflected in EPF’s work on the EU Biotech Act and its proposed changes to the clinical trials framework. In its position on the proposal, EPF supports reducing unnecessary administrative burdens and making clinical trial processes more efficient and predictable. However, shorter timelines must not come at the expense of patient safety, robust evidence, transparency or independent, patient-centred ethical review. EPF also calls for meaningful patient involvement in trial design and ethics committees, clearer information and consent processes, and better access to clinical trials across borders. This approach also underpins the READI project, which works to improve the inclusion of underserved and underrepresented communities in clinical studies. When study populations do not reflect the people who will use a treatment or technology, important differences in safety, effectiveness and treatment burden may be missed. Representative research is therefore both a patient safety and an equality issue. 

Patient safety begins before a medicine or medical device reaches the people who will use it. Through its European research projects, EPF brings patients into the development process from the outset. 

In HEU-EFS, EPF and Global Heart Hub coordinate a Patient Advisory Group contributing to a harmonised European approach to early feasibility studies for medical devices. Patient input can improve study information and consent materials, strengthen the relevance of evidence, and show whether a device works in people’s daily lives as well as in a controlled study. 

The ENKORE project explores how medical devices and healthcare packaging can become more sustainable without compromising safety. EPF connects the project with patient communities and helps ensure that circular design, procurement and waste reduction remain consistent with patient needs and safety standards.  

In PROACT EU-Response, EPF coordinates patient and community engagement and communicates scientific information on adaptive clinical trials and pandemic preparedness. The project’s Patient Advisory Group reviews activities and raises practical concerns, helping ensure that research for future health emergencies is understandable and grounded in people’s needs. 

Patient partnership is part of the safety infrastructure 

These activities cover different issues, but they point to the same practical lesson. Safety improves when patients are involved early, when their input reaches the people making decisions, and when they can see how it changed the outcome. Questionnaires, consent forms, research protocols, regulatory frameworks and public information become safer when they reflect the reality of living with illness and navigating care. 

For EPF, safe care for life means addressing risks throughout the care pathway, from prevention and diagnosis to treatment, monitoring and long-term management. It also means looking beyond hospitals to primary care, homes and communities. 

On World Patient Safety Day, we call on policymakers, regulators, researchers and healthcare organisations to create permanent and properly supported ways for patients and patient organisations to contribute. Involving patients only after harm has occurred is too late. They must help shape the systems, studies, technologies and policies intended to keep care safe.