Pre-Visit Planning

Posted on 3 April 2013 by ImproveCareNow

Imagine being a patient who arrives at the clinic and can really sense that the providers are ready to meet your needs!

Imagine knowing that your whole care team sat down a week in advance to review your disease course over the last six months, track down any missing lab results, and troubleshoot with colleagues to figure out why it’s been so tough to keep your disease in remission. Imagine getting a call from the nurse a full week before clinic to ask what has been going on since your last visit and, as a result, the social worker is in clinic and ready to discuss solutions to the issues you are having at school. Imagine the lab having your orders well in advance so that the collection tube that they have to use, but don’t keep stocked, is ready and waiting. This time you don’t have to wait while they run down to the supply room, making you late for school and your parents late for work.

The automated pre-visit planning tools that ImproveCareNow centers are now able to use will help make scenarios just like these a reality. Providers will have detailed summary information about their patients available at their fingertips when they need it…before the visit. They will have a concise, printable tool that can be easily shared with the rest of the care team. Ideally, this tool will be used to guide conversations with parents and patients before they come to clinic so that they can be a part of planning their visit, not just passive participants in it.

The result will be more reliable, proactive and individualized pediatric IBD care.

[editor's note: submitted by Sarah Myers, MPH, RN | Lead Quality Improvement Consultant for the ImproveCareNow Network]

C3N Webcast

Posted on 25 March 2013 by ImproveCareNow

Learn more about C3N’s N-of-1 Study and the MyIBD Platform

We invite everyone who is interested in innovative new approaches to chronic illness care to join this free, live and interactive webcast hosted by the Collaborative Chronic Care Network (C3N) on April 5^th at 1pm ET.

Ian Eslick

Ian Eslick, of the MIT Media Lab, and Dr. Peter Margolis, Scientific Director of the ImproveCareNow Network and co-principal investigator of the C3N Project, will chat informally about the C3N’s innovation, the N-of-1 Study, & technology platform. This is a great opportunity to listen and learn more about how C3N is helping clinicians and patients work together on their care.

Better

Posted on 27 February 2013 by samisophia

I’m often asked if I believe ulcerative colitis has changed me for the better.

It’s a tough question. I can’t go back in time and see how my high school years would have played out otherwise. There is no me, as I am now, without ulcerative colitis.

Has ulcerative colitis changed me for the better? The simple answer is no. My disease has not changed me outside of my intestines. I am the same girl with a few extra pills. The more complicated answer is yes* – with the asterisk. It’s based on a technicality. No, UC has not changed me for the better, but living with UC has.

It starts with another girl: one named Tara. She was diagnosed with Crohn’s Disease during her second year of medical school. A few years later, Tara had chosen to pursue a career in pediatrics and found herself on the inpatient rotation at my children’s hospital in April ’08 – the month of my diagnosis and subsequent hospitalization.

You can guess how this plays out.

I was the “I’m okay” kid in the hospital. I felt so good on steroids and so relieved to have a name for my disease, my answer to most everything became standardized. Did I want a visit from the art therapist? “I’m okay, thanks.” Did I want another blanket? “I’m okay, thanks.” It was my standard answer, so if asked if I wanted to participate in a mentoring program, I would have probably answered predictably: “I’m okay, thanks.”

Tara was the mentor this “I’m okay” kid never wanted. She stayed one day after rounds to share her story. A day past diagnosis, I hadn’t yet started to think about what a future with IBD meant. Thanks to Tara, I never doubted my potential. From the get-go, I knew Tara’s story. If she could continue to pursue her passion with IBD, my possibilities were equally endless. Until I met Tara, I didn’t realize mentoring is not an emergency measure; it’s a survival skill. Her confidence inspired my confidence.

Being a good mentor is not about knowing the “right” thing to say or the “right” moment to say it. There will be moments when you don’t know what to say, and there will be moments when it’s best to stay quiet and just listen. Being a good mentor is not about the story; it’s about the storyteller. The best storytellers – and the best mentors – realize that every story matters – and every story can change another story for the better.

Until I met Tara, I never believed a single patient voice could matter. Clearly, as I’m here blogging, I do now.

YouMeIBD: Making the Connection

Posted on 7 December 2012 by samisophia

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. Jennie and 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.

YouMeIBD 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.

Shoulder to Shoulder

Posted on 6 December 2012 by jendavid91

A children’s hospital is, at its core, fundamentally different than an adult hospital; not better or worse, but different. My memories of my pediatric hospital include bright murals running down the halls, butterfly-shaped wards, having the Easter bunny visit when I was an inpatient, and a box full of finger-puppets courtesy of the blood lab. I was still sick, but there was a very intentional way that my parents were involved, like extra chairs in hospital rooms for family to dish out opinions and help decide. The first time I was in the adult hospital my Mom cried. The hospital room was beige, had four beds, and was wholly adult while I still felt like I was trying to grow up.

When I was transitioning to adult care, I had a singular ‘transition appointment’ where I was supposed to magically become an adult (this, however, did not happen). It’s kind of like if you want to get from point A to point B with a dozen eggs – you should probably keep them in the carton to transfer them, versus spilling them into the bag without protection and ending up at point B with a bag dripping with yolk.

That’s why it’s so exciting to be talking about Patient Activation. Just as the name suggests, the goal is to help patients and their parents become more active and engaged in their medical care. If you want to go to Spain and speak fluently, you need to do more than buy a dictionary – you need to practice.

Currently, the Patient Activation intervention is capitalizing on something patients are really great at – using their phones. Participants receive texts on a weekly basis with a question about their health status and when they text back, the answers are saved. And then all of their responses from the Inter-Visit Planner are aggregated and given to the participants and their doctors. What’s so cool about this is that participants and doctors are entering an appointment with things to talk about, which help everyone make better decisions about their medical care.

Another really interesting part of this intervention is the Patient Status Tracker, which helps translate medical language into accessible English. I can remember sitting in appointments when my doctors would talk to one another and I had no idea what they were saying, even though I was sure they were speaking English – medical lingo is hard to understand, especially when it comes to test results. The tracker gives participants an insight into their care through visualizations of test results and plain language.

Growing up is hard. All of a sudden it’s a lot to be responsible for, but when one of those responsibilities is medical care for a chronic illness, it’s all the more important to have the necessary skills and support. This way we can truly stand shoulder to shoulder with our doctors, hand in hand, to make the best decisions for ourselves and our diseases.

Jennie