I wish I knew _______ about IBD.

Speak out. Tell ImproveCareNow what IBD questions need to be answered.

What do you wish you knew about Crohn’s disease or ulcerative colitis? Do you have questions about diagnosis or treatment options? What about daily management of IBD? Maybe you’ve wondered if a certain drug or lifestyle change would help. These are important questions! The answers could have an incredible impact on your life, the life of your child, the lives of many patients living with IBD.

ImproveCareNow is ready to answer your important questions – but we need you to tell us what they are!

Patient Priorities IBD Learning Priorities ProjectTeens and young adults with IBD, and their parents and clinicians are invited to participate in the IBD Learning Priorities Project - a study being conducted in partnership with Patient Priorities. Participants will be asked to share questions and concerns about IBD, and it’s treatment, management, etc. in a confidential survey. The results will be used to create a list of the top learning objectives for ImproveCareNow to focus on.

Speak out! Tell us what you need to know. Go to patientpriorities.com to complete your brief survey, now.

From Stories to Full CIRCLE

One of the most challenging things about my job as Communications Manager for ImproveCareNow is trying to take a Network that is as vast, as diverse, as groundbreaking as ImproveCareNow, and distill it down into a single clear message that means something…to Paul Patient, to Prudence Parent, to Carrick Clinician, to Igor Industry, to Harold Healthcare. I think about this a lot. I talk about it with my colleagues. My husband actually asked me to stop talking about it with him.

One day I found myself talking about it with one of the fabulous parent partners who volunteers her time and brilliance to help ImproveCareNow transform care, health and costs for all kids with Crohn’s disease and ulcerative colitis – and she highlighted for me how I’m failing at my job. Yup. I already knew that.

But, guess what, she let me know that she’s struggling too. She’s tried many times to explain what ImproveCareNow is, and what we do, and each time has been met with a “huh?”.  Actually, it’s not the first time I’ve heard this story. I think many of us have tried to explain what ImproveCareNow is and been met with “huh?”, because we’re trying to squeeze the WHOLE story in. I get it. There is so much great work going on in ImproveCareNow; it’s irresistible to try and cover it all.

ImproveCareNow heart-shaped word cloud

But, let’s go back to failure for a moment. In our network we know failure is really just opportunity in disguise. An opportunity to learn something new, to change the way we approach something, to make an improvement.

So, on that note, I’ve been thinking about opportunities to Improve Communications Now. And I’ve decided it is not my job. Wait, did I just fire myself?! No. It’s not my job because, like so much of what we do in ImproveCareNow, I can’t do it alone. It is going to take a village.

And and then occurred to me. The village exists! There’s Steve from the Research Committee. Melida from the ICN Exchange. Sarah M. from the Quality Improvement & Executive Leadership teams. Jamie from the Parent Working group. Jennie & Sami and all the PACers from the Patient Advisory Council. There’s Noel from the Psychologist/Social Worker group. Michael who is a psychologist, researcher and a parent as well. And more. And they are all here on LOOP.

Ok, so we’ve got the village. Where do we go from here? Well, I think we should expand the village. Bring more storytellers into mix. In fact, I think you should consider being one of those storytellers. How will you begin? A great way to start is by asking yourself “what is my ICN story?” Write it down. And send it to me.

As for me, I’ll just sit back and let you do all the work. I’m just kidding! I’ll be here, helping you along the way. I’ll work with you as your editor, your collaborator, your writing coach. My job is to help you share what ImproveCareNow is through your story. And it’s also to take your story, and the stories of many others, and showcase them together so they reveal the bigger picture. And that is how we will go from stories, to the WHOLE story. That’s how we’ll go full circle.

- Sarah

Beta Forever!

ICN Exchange Developer Dave Davis  dreams the perfect ICN Exchange

Dave Davis :: Dreaming the Perfect Exchange

If you haven’t noticed, the ICN Exchange team thinks you’re special. Why? Well, when we set off on this journey to create…

ICN Exchange Purpose

…we weren’t really sure how to do it. So we asked for your help, and you have continued to tell us what works and what doesn’t ever since. You have given us your time and your ideas and we hope you can see the difference it has made in making the ICN Exchange the knowledge-sharing tool you need. A platform that helps all of us pursue our shared mission of transforming care, health and costs for all kids with Crohn’s disease and ulcerative colitis – of being the ‘cure for waiting for the cure’.

We have always known that our work is rooted in community-building, and connecting people and ideas; not necessarily in technology. Your participation continues to confirm our belief.

Here’s what we’ve learned, as you have joined our team in dreaming of the perfect ICN Exchange:

  • Multiple “repins” of the same item can be confusing
  • When an item is “repined” the conversation happening in the comment section does not transfer
  • It would be great if you could search for a person, and if the search function were more efficient generally
  • It can be hard to find what you are looking for, i.e. the navigation of the site should be more intuitive
  • It’s difficult to upload and share items properly, especially if you have a lot to share
  • On some mobile devices, the ICN Exchange experience is not great

ICN Exchange users, please let us know if we’ve missed anything.

P.S. If you want to learn even more about the ICN Exchange, check out our Harvard Open Forum Idea submission, an effort led by Dan McLinden. This is our response to the question: What proven innovations have you created that would enhance health care value in the U.S. if broadly disseminated?

URL for Harvard Open Forum: http://t.co/l3oe2Hbr9k

BTW you can follow the ICN Exchange on Twitter, it’s a great way to keep in touch & tells us what you think.