AiArthritis logo showing stylized infinite loop symbol in red with black dots, above organization name for International Foundation for Autoimmune & Autoinflammatory Arthritis.

We are helping OMERACT give patients the opportunity to have a voice in research.

Overview

OMERACT stands for Outcome Measures in Rheumatology and represents a community of patients, health professionals and researchers. They work together to improve the conduct of clinical trials by developing core sets of outcome domains. A core set of outcome domains is a short list of the most important outcomes (results or endpoints) that should be measured in every clinical trial.

The OMERACT working group for shared decision making has been working together for a few years to develop a draft of core set of outcome domains for evaluating shared decision making interventions in rheumatology.
While there are several dozen patients currently involved in OMERACT projects, only a certain percentage can attend the in person meetings, because the stakeholder representation at these meetings must be balanced (usually around 20 or so patients). But the other patients who are involved still get to submit their opinions pre-meeting, through surveys, so their voices are still counted. NEW THIS YEAR – they are inviting ALL patients around the world to weigh in – regardless if you are part of OMERACT! 

To test this method of collecting opinions, there are two of the working groups that are opening their survey up to the larger patient population One is the Shared Decision Making group. Shared decision making (SDM) is the process of choosing an intervention based on discussions between patients and doctors and by considering the existing research/facts and the patient’s preferences. 

Do you want to give your opinions on this topic? It will take about 20 minutes to complete. 
  • There are two 5 minute videos to watch first – one that explains what OMERACT is and what the shared decision making process looks like (video 1), and one that gives an overview of which outcomes the team feels are important when evaluating SDM interventions (video 2). 
  • After watching the videos, you can proceed to the short survey to help the team improve the clarity and relevance of the draft core set of outcome domains for shared decision making interventions in rheumatology. You do not need experience to give your opinions – if you are diagnosed with a rheumatic condition, you are qualified to give your opinion.

BUT WAIT – that’s not all! If you want to be even MORE involved, at the end of the survey register to be an official participant of the virtual shared decision making workshop that will happen in April in conjunction with the live OMERACT meeting! You’ll be invited to participate in online discussion boards and in the final voting on the core set of outcome domains for shared decision making interventions in rheumatology. This second phase of the process is completely optional.

This study has been approved by the Research Ethics Board at the Children’s Hospital of Eastern Ontario (CHEO), Ottawa, Canada. Your information will be anonymized and treated confidentially. If you have any questions about the study contact ktoupin@cheo.on.ca.

TAKE THE SURVEY
International Foundation for AiArthritis CEO, Tiffany Westrich-Robertson, participating as a patient research partner at OMERACT 2018 in Terrigal Australia. She is with Jo (from Australia) and Elin (from Iran), two of the other patient partners at the meeting. 
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