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The Arthritis Newsletter

Spring 2015

You Can Take Part in Arthritis Research

By Kelly English

 

In which the author outlines the how and why of becoming involved as a patient in arthritis research.

 

Did you know you can have your opinion on arthritis heard? Have you ever wondered how researchers come to the conclusions they do?

 

For the past couple of years I have been involved with arthritis research at the Arthritis Research Canada centre in Richmond, B.C. The researchers are amazing and really care about making life better and easier for people living with arthritis. Most important to me they are listening to patients; people like you and me or maybe someone you know.

 

The researchers made it easy for me to help. They told me the time involved, communicated in a way that was easy for me (phone, email, web based questions and focus groups in various areas). The focus groups were great fun – discussing with small groups topics such as electronic health (blogs, tech gadgets such as Fitbits,) and now medication-taking. They respected my time, energy and me. When a person has arthritis this is really important.

 

So, what kind of research can you and I contribute to? Presently there are several studies ongoing in different areas. I personally have done a study using a Fitbit to see how easy it was to use for the patient, trying two different fitness meters to see how they compare.  There will be ongoing studies in this area. Some studies involve keeping a health journal to improve communication between doctors and patients. There are also studies on osteoarthritis and joint replacements. Some are disease specific, such as lupus or osteoarthritis in the knee.

 

Check out our Participate in Research page to find out which research projects are looking for participants.

 

So, how do you get involved? Look on the research page to see who needs participants.  Phone or email the research team to get information on whether it is something that you can help with. Let them know your time or energy restraints.

 

Read about the studies that have been completed and don’t forget to check out the videos on the https://www.arthritisresearch.ca/videos These videos will show some of the outcomes of completed research topics and what is happening going forward. They will also give you tips on living easier with your arthritis.

 

Remember that you do not have to have a degree to help out on these. I have a little college but lots of arthritis experience. You could also say I have a life diploma on arthritis to share with others. You probably do, too. Occasionally a small honorarium is given upon completion of the group, which helps pay for your gas or transportation and parking. Any instructions given to you or the group will be clear, well thought out and the project will have passed the ethics committee as well as peer reviews. Rest assured any questions about how to do the questionnaires online or journals will be answered in a timely manner. In the Fitbit project, for example, the researchers were quick to answer any problems in the online questioning, helping us with problems getting into the program and answering the questionnaires when there were glitches.

 

So, jump in – Arthritis Research Canada is ready to take on the things that make life better for us. Let’s share our knowledge, our experiences and our opinions and help move the research forward.

 

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