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:

  1. Join Glu www.myglu.org (if you haven’t already.)
  2. Scroll down to the bottom on the home page, in the glu u section click October’s Survey.
  3. 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. 
  4. 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. 
  5. 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? 

Thanks.  

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9 Responses to Glu Survey on Type 1 Diabetes & Emotions

  1. bennet says:

    Thanks Scott. I hope it is way less about helping me than about helping raise the voice of patients in research.

    Best.

    BD

  2. Bill Woods says:

    Thanks Scott sharing this survey and writing this post. You have written some great articles about diabetes and emotions, and I know as well how important this topic is. Thanks again for sharing, and thank you Bennet for all your input and support!

  3. This kind of patient-response research is so key, and so thank you Scott and Bennet and those at Glu for working to make this happen. Looking forward to seeing how it materializes and the impact it can make. Hope more sign on to efforts like this, as well!

  4. Laddie says:

    Scott – You’ve inspired me to give Glu another try. I was one of the many beta testers and really did not like the site. Today was the first time I’ve been there in months. By adding the comment section to the daily question, they’ve improved the value of that tremendously. The other thing that I will just have to live with is knowing that discussions on this site are old, not very active, and therefore somewhat worthless. The Shouts are where the action is and that’s where I will have to participate. (Shouts have a word/letter limit, so no more long posts for me. Maybe that’s a good thing….)

    I did complete the survey.

    • bennet says:

      Laddie

      Good points all. I would add that this research function at Glu U is totally new and the more of us who can participate the more useful it will become. Thanks so much for coming back and helping out.

  5. Thanks Laddie we here at Glu are Listening, thank you for giving it another try! We increased the shout text to 400 characters! Up from 200 characters! There have been many great changes to Glu since the beta launch and many more improvements to come!

    Thanks again!

  6. Karen says:

    Thanks, Scott. Heading over to do the survey now.

  7. GluJoyceMD says:

    Thanks for your support Scott. If there are specific topics that you are interested in focusing on for future Glu studies please let us know. We really want community input so that the studies are both meaningful and relevant. Thanks, Joyce

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