Information

 

We report on our activities and help you to find the information about:

 

  • different rheumatic and musculoskeletal disorders,
  • patient organisations in Switzerland,
  • other matters around patient involvment that we think are important.

 

Let us know of any reliable sources that we have missed!

 

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The first project

 

How to find out what matters most to patients with rheumatic and musculoskeletal diseases?

 

To answer this question, we have decided to work with the James Lind Alliance (JLA) initiative and conduct the first project with them in Switzerland.

 

The JLA is a British non-profit initiative, established in 2004. It brings patients, carers and clinicians together in Priority Setting Partnerships (PSPs) to identify and prioritise evidence uncertainties or unanswered questions they would like answered by research.

 

Evidence uncertainties are questions about healthcare that cannot be answered by existing research. These might be questions about particular treatment options, methods of care, or diagnostic tests.

 

Therefore, PSPs aim to address the mismatch between what researchers choose to research, or funders support, and what patients, carers and health professionals actually want to know. They provide an important and valuable opportunity for patients, as the end users of research, to help shape the research agenda.

 

Our work will raise awareness of what really matters to the people who are affected by disease and illness in their everyday lives.