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Advocating for chronic pain sufferers

Chronic Pain | Last Active: Jul 2, 2016 | Replies (28)

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@colleenyoung

@19lin I completely understand the frustrations of usability on the Connect website. We are working hard to improve it. In fact, you will see improvements coming this week and next. They can't come soon enough as far as I'm concerned. When I first started to direct the redesign of the website, there were so many things I wanted to happen immediately, but I've had to learn to be patient. It takes a team. Now I've gotten used to the site, so sometimes I am blind to its awkwardness, which makes comments like yours extremely valuable. I'm going to review the WebMD site more closely. I've also been impressed with the usability of other online community site that we are modelling. We'll get there. Thanks for sticking with us. Keep the feedback coming.

On Wednesday, we are publishing a series of "how to" instructions on Connect.

Online groups tend to disintegrate without a moderator or mentor. I love the role of moderator. It's like being a fly on the wall. I learn so much. Our primary role is to help connect people, foster the conversations and ensure respect is maintained. People can disagree, of course, and this can always be done with respect.

Like you, I believe a group around the topic of chronic pain was sorely needed (pun intended). At this point in time, the focus of Connect is to concentrate on patient-to-patient exchange. We will invite medical provider participation in the next phase of our growth.

Thank you for being an integral, frequent and supportive member of Mayo Clinic Connect.

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Replies to "@19lin I completely understand the frustrations of usability on the Connect website. We are working hard..."

Hey colleenyoung it's briansr. Not brain, it's been happening all my life<br />
so don't feel weird!! briansr<br />

@19lin What your trying to do sounds great and alot of work and red tape. If we
can get Mayo Clinic & Hospitals behind us even better. I would like to see
excerpts from our discussions eventually all printed up, since our true
names are unknown, and passed in bulk to Senators, congressmen, the FDA,
the President, hopefully not Dump Trump, and anyone influential in
government. Big wish list I know, but it can be done, anything can be done
if we try hard enough!!!!!

I agree with you. As you say it will be hard and probably not possible thru Mayo web site as it would be to political. Still there are ways, but as with me my disability is enough to keep me from doing more than online support. Still I think online activity can be enough to bring about some action. There are onsite petitions that anyone can set up and send to officials to make them aware of public feelings. Right now taking break to fight sciatic attack. 19lin <br><br><br><br><br><br><br>Sent from Windows Mail

Like to know why under some of these comments you can reply et under others you cannot. I accidently hit report d/t I thought it would report/write on here what I had to say. Not like report on someone else et their comment:(

Hi @teddy69 Thanks for your comments. The issue with the REPLY button is being worked on as we speak. There will be a reply button after every message in a day or two.