Anyone with any contact with healthcare is probably finding this a very difficult time right now. Some people might be feeling scared, or frustrated, or confused. There is a lot of information whirling around about medications – should they be started, continued, stopped? Now more than ever before we appreciate the medical researchers in industry and academia who have been working over the years to develop better, safer treatments for patients with rheumatic conditions.
Our aim is that for every rheumatic condition we will have a “core set” of “outcomes” which all clinical trials should measure in order to get approval for a new drug. For example, if the core set for a particular arthritis condition were to include pain and physical function, then a trial of a new drug for that condition should measure whether the new drug did actually improve both pain and physical function. Rheumatic conditions e.g. (rheumatoid arthritis, osteoarthritis, gout, etc) should not all be lumped together and it is our aspiration that there is a core outcome set, driven by what both doctors and patients think is important, for every single rheumatic condition. We have made amazing progress over the last couple of decades, but now we are wanting to reach out to more stakeholders than ever before.
OMERACT usually has a big conference every 2 years, where we get together to discuss the progress within our different working groups. At our conference we encourage each working group to bring at least one patient research partner and a fellow. With the coronavirus outbreak we are unable to meet in person in April 2020. This however brings a great opportunity – in that for the first time we now have the opportunity to involve a larger number of stakeholders so that we can seek a much broader range of opinions about what is important to measure. We are starting with 2 virtual workshops 1. Flares in Osteoarthritis and 2. Shared Decision Making.
If you get involved in this online workshop, in total you would need to spend about 3 hours online. This would be split across a few sessions and could mostly be done at a time convenient to you. We have made an app to help you. There will be videos to watch, articles to read and discussion forums where you can chat with other participants including patients and doctors. If you are interested in donating your time and your experience please complete this form https://www.surveymonkey.com/r/OM20VR once complete you will receive detailed instructions and ongoing support.
You can also contact Shawna Grosskleg at firstname.lastname@example.org at any time with questions