Today’s post is intended to help Bennet spread the word about a survey on MyGlu. I am a supporter of what the T1D Exchange (of which Glu is a part of) is all about, and am happy to help whenever I can.
Straight from Bennet’s post:
A few days ago I wrote about research were patients were not seen as a stakeholder in research. There were some good comments and I encourage you to go read them. If researcher are part of the problem so at times maybe are patients. I think at times we don’t participate as much as we should (arguably because we don’t see the results as being to our benefit or even accessible.) We need to step up when we can. Here is place we can.
Here is how to share your voice:
- Join Glu www.myglu.org (if you haven’t already.)
- Scroll down to the bottom on the home page, in the glu u section click October’s Survey.
- Look over the terms and agree as appropriate, this is being run by real researches so yes there is a real consent process. (I think that approachable research is a good thing). Enter you password so they know it officially OK with you.
- There are a number of questions each has its own page. A few of pages is a little cumbersome yes but it is a good start and an important topic.
- Participate, spread eh word and help make it better.
Full disclosure. I was part of a group that offered views on how to start this process and communicate it to the DOC. I would love to see it succeed not because I had a tiny part in getting the ball rolling but because I think patients voices need to be bigger part of the research process. Here is a chance to do that. Lets all help make the effort a success so they keep doing it.
Why not parents? As I said this is being done by real researches with review boards and all that that involves. Doing research with kids, even parents sharing information about their kids is anther level of dotting I(s) and crossing T(s). It should be. Kids deserve to be protected with a little extra diligence. In the mean time parents of T1D kids share this with fiends in the adult T1D community OK?