#crohns #ulcerative colitis #improvecarenow #quality improvement #hcsm #patients #patient engagement #Inflammatory Bowel Disease #ibd #healthcare #pediatrics #doctors #research
A blog showcasing the work and interests of a former ePatient minor. Thoughts cover the gray area between pediatric and adult ePatients. Adolescents and young adults with chronic illnesses are conquering the virtual space and connecting through their shared experiences. My hope is to help them use their powers for good.
Jill just completed her master's degree in child development at Tufts University and is now working as a researcher at Boston Children's Hospital. She is passionate about speaking on networked natives and lifecasters with chronic disease, and is always happy to do so.
Her opinions are her own, always.
it’s like -
(Source: livingbeyondwithguts)@4 months ago with 52 notes
|Attention all patients with IBD:|
|I've been given a great and overwhelming opportunity to talk with the Institute of Medicine about how patients feel about clinical research and researchers sharing their protected health information. If you've ever participated or thought about participating in any kind of research study, I'd love to hear about your experiences - good, bad, and ugly.|
|Some key questions:|
|- Do you feel like you're fully aware of how researchers use your information to conduct clinical research?|
|- Do you understand the benefits of sharing your clinical data with researchers?|
|- If not, how can researchers better make sure that you are/do?|
|Looking forward to this important discussion with all of you..|
@6 months ago with 24 notes
I mentioned that there is a group of us motivating each other, whining together, and keeping each other company through these few weeks as our bodies try to make exams infinitely harder than they already are.
Now we have a tag to find each other!
So if you are struggling, please join us. We’re up most of the night & love our 3 minute dance parties when the anxiety hits. Don’t struggle alone.
Tweet @chroniccurve with #spooniestudent and we will be very glad to welcome you to the group.
And the wonderful Sami Kennedy closes out Crohn’s and colitis awareness week with a post on connecting:
Today is the last day of Crohn’s and Colitis Awareness Week – a week of awareness and pride. Four and a half years ago, my world was rocked by my diagnosis of ulcerative colitis. April 22, 2008. Today, though, I’d like to suggest that my story really starts nearly three years later on April 11, 2011.
Three simple little words sparked many of my closest relationships: You. Me. IBD. Jennieand I are a perfect example. Although we have since found we have much more than our diagnosis in common, our friendship began because I also have IBD and (with an embarrassing amount of enthusiasm) wanted to write for her blog. YouMeIBD is also the name of a soon-to-launch C3N innovation. Young tech-savvy IBD patients are apt to go to the Internet looking for support, but they (a) may not know a safe community in which to find it or (b) may feel too timid or cautious to ‘friend’ others within a support community such as a Facebook group. We all may have the same diagnosis, but we all know our diagnosis is not our identity. YouMeIBD works on the presumption that mutual interests are far better indicators of friendship potential, and thus suggests friends for a patient based on mutual likes and dislikes.
How? A game-like quiz prompts users to answer questions about their likes and dislikes. Their answers, along with other information shared with the app, matches them to other patients within their age range with similar interests. Users can also create their own questions. The theory behind all of this is that use of YouMeIBD will be associated with increased patient social network density and engagement, an increased sense of well-being among patients, and ultimately better health outcomes. Why are connections between patients important?
In April 2008, I came home from the hospital with a link for an online support community. I shrugged it off with excuses for why I was okay on my own – and I was. For nearly three years, I got along just okay on my own – but just okay isn’t wonderful. I felt a hole, but I knew it wasn’t because I needed help. It took me three years to realize the opportunity to be a friend is just as valuable as the opportunity to have a friend. On April 11, 2011, I came home from school, where few knew my diagnosis and even less knew my story, and for reasons I can’t remember, decided I was ready to click the link. I found a community that day. My world was rocked for the second time. The day I sparked my first connection around three words: You. Me. IBD.
eIBD will facilitate those connections for so many more patients. By sharing our stories and connecting with other patients, we will be not only benefiting ourselves but the community as a whole. The research behind YouMeIBD suggests that while much communication regarding chronic illness among patients tends to be negative (though absolutely understandable), positive communication fosters motivation, happiness, and confidence. The psychosomatic effect of a patient’s support community, or lack thereof, is profound. YouMeIBD’s mission is to enable positive and constructive relationships, the key to which is connecting patients with ties between them that go deeper than their diagnosis. Jennie and I have contributed to the development of YouMeIBD for several months, and I speak for both of us when I say we are thrilled to be nearing the launch date for an application with so much potential.
A wonderful mentor of mine, whom I met through that very first online support community, once advised me: “If it’s scary, then you should run at it even harder.” It’s a quote I keep on my computer desktop because I believe in it so wholeheartedly. IBD is scary, but I think it’s even scarier if you allow that fear to paralyze you from taking steps forward toward recovery – of the body and the spirit. It took me three years to grow the courage to share my story and find support, but I would not be here celebrating Crohn’s and Colitis Awareness Week or writing this blog post if I had not run towards that fear. Be brave. Reach out. Get involved. We’ve shared with you many opportunities this week, and there are so many more if you open yourself up to the possibilities. On April 11, 2011, I found the confidence to reach out, and that same confidence carried me to writing for this blog. It will be scary, but do it anyway.@6 months ago