Friday, July 10, 2015

Have YOU joined Arthritis Power yet?


Arthritis Power is a great program from CreakyJoints, which you definitely need to join if you haven't yet! Not only is my new sexytimes blog there, but it's one of the largest arthritis communities out there.

What it may look like when you log in
AP allows you to track how you're doing by asking you about pain interference, physical function, sleep disturbance, fatigue, and a general health assessment like you might complete in another tracking app or at your doctor's office. This last part asks questions about dressing yourself, getting in and out of bed, washing and drying your body, and more. It also asks about anxiety or depression and emotional well being. It will then give you these handy reports that track over time how well you're doing. You can see that, at the beginning of this month, I had a bump up in my pain.


All of these are minimized when you first get in there, though, and there is a nice color coding system to show where you're doing okay and what might need attention.


That top one, my pain disturbance, needs attention. Hooray!

You can track your medications here as well which is nice. There's even a great button to EMAIL the results, whether that's to yourself, to your husband so he knows what's up, or to your doctor. How great is that??


I did this a little backwards because I was so excited to share. You probably wouldn't mind knowing who gets this data and how it's used huh?


To steal a bit from Ol' Abe, AP is "of the people, by the people, for the people." What I mean by that is that this project involves patients in all aspects. There is a Patient Governor Group that helps identify research needs and prioritizes requests member of the program may have for what they'd like to see! This is also a part of the National Patient-Centered Outcomes Research Network and Patient-Centered Outcomes Research Institute that was created by the Affordable Care Act.

Data winds up being shared with researchers at various universities who are working on understanding musculoskeletal diseases like those associated with arthritis. It's shared anonymously and is a way for us to be involved with research without the ability to be excluded due to medication use or other things like can happen with clinical trials and such.

What I love the most about this is that they're soon releasing an app for iThings and Androids where you can track this on the go. This is great for me, because I don't remember to log in as much as I used to...

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