#NichtsÜberUnsOhneUns
#NothingAboutUsWithoutUs
Patients First!
The healthcare system has recognized the need to prioritize patients – yet their voices are still too rarely heard in research and decision-making. Individuals living with rheumatic and musculoskeletal diseases know best what works in their daily lives, but their experiences are often overlooked when treatments or studies are designed.
RheumaCura is changing this. We connect patients, carers, researchers, and healthcare professionals to ensure that knowledge from real-life patient knowledge guides research questions, shapes study design, and speeds up the path to better treatment and care. By supporting RheumaCura, you help advance a future where health research starts – and ends – with what truly matters to patients.
A system Under pressure – A chance for change
In recent years, the global healthcare system has been in crisis mode. Costs and insurance premiums keep rising, while access to healthcare and trust in medical science is faltering. Staff shortages are worsening as many professionals leave due to workload, limited resources, and a loss of shared purpose. The Swiss film Late Shift impressively captures these tensions and the human side of a system that is struggling to maintain the quality of healthcare.
This crisis is also an opportunity. Around the world, new voices – especially those of patients – are calling for change. In 2024, the World Health Organization recognized this shift and adopted a resolution calling on countries to involve citizens more actively in decisions about their health. Switzerland is slowly moving in this direction, including patient representatives into policy discussions, expert groups, and research projects.
At RheumaCura we are part of this transformation: giving patients a real voice in shaping research and helping rebuild a healthcare system that listens to, learns from, and responds to the people it serves.
“Nothing About Us Without Us”
Patient-centred research means doing research with patients, not on them. It recognizes that progress in healthcare must begin with those living with the conditions being studied – not with professional ambition or commercial goals. At RheumaCura, we believe that only research grounded in patient reality can deliver care that truly works.
From feedback to partnership
Many healthcare systems invite patients to answer surveys, join focus groups, or share feedback – yet these efforts rarely lead to real change. Lasting impact comes when partient become equal partners in research, bringng their lived expertise to the table and helping to shape studies from the inside.
From setting questions to shaping results
The highest level of involvement happens when patients lead or together with researchers co-design them: identifying the most relevant research questions, defining outcome measures, and assessing how new treatments work in daily life. Collaboration makes research more meaningful, efficient, and ultimately more human.
Questions patients help us to ask
These are the types of questions that move research from theory to impact – and ensure it stays centred on the people it aims to help. Every patient experience brings insights that can advance research.
At RheumaCura patient partners help us explore questions like these:
1
Are we asking the right questions – the ones that truly matter to people living with these conditions?
2
How can we design studies so that the results are relevant to everyday life and specific health challenges?
3
Who are the right patient partners to involve, and how can we reach and support them?
4
How do we gather and understand information from daily lived experience – what actually works in everyday life?
5
How can new knowledge be shared and safely applied in practice to benefit patients sooner?
6
How do we measure success and keep learning to make future research more useful?