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]
ImproveCareNow Network Director, Dr. Richard Colletti, announced that on Wednesday March 27, the first electronic data transfer was performed successfully. ImproveCareNow data from the Electronic Health Record (Epic) at Vermont Children’s Hospital was successfully transferred electronically to the ImproveCareNow registry (ICN2).
The data had been entered by the pediatric gastroenterologists and nurse practitioners as part of clinic visits using an IBD SmartForm specifically designed to have extractable data elements needed for ICN2. The data was then extracted and transferred to ICN2. Going forward, Vermont will continue to transfer data electronically. Read more about electronic data transfer and the ICN2 registry in an article by Keith Marsolo, PhD – Director of Software Development and Data Warehouse at Cincinnati Children’s Hospital Medical Center.
This is a major milestone in the Network’s plans to enable all ImproveCareNow centers to have electronic data transfer, eliminating the need for manual data entry of numerous data elements, reducing the time and cost of data entry, and improving the completeness and accuracy of the data.
All ImproveCareNow centers who use the Epic IBD SmartForm for data collection can now utilize the electronic data transfer process. The IBD SmartForm is accessible in all Epic systems. The Network is prepared to help all centers using Epic to access, configure and clinically use the IBD SmartForm as soon as possible.
ImproveCareNow is also working with other EHR companies—Cerner and Centricity now, and Allscripts soon—to develop similar forms that will collect extractable data necessary for electronic data transfer to ICN2. These 4 companies serve 80% of the centers in ImproveCareNow.
Thanks and congratulations to Keith Marsolo and the team at Biomedical Informatics at CCHMC for their unflagging commitment and success, and to all who have envisioned and worked to bring this to fruition.
We’ve taken our first step—we are ready and eager to work for and with our care centers as we dash into the future of model IBD care.
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 5th at 1pm ET.
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.
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.