The Lybbaverse / cincinnati-childrens-hospital-medical-center  

It’s All In The Data: Cincinnati Children’s Hospital Gets Wonky To Transform The Health Of Its Community

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iStock_000022532736XSmallLybba’s partner, Cincinnati Children’s Hospital Medical Center (CCHMC), was recently featured in Forbes’ Profiles in Innovation, a weekly series of interviews with pioneering health leaders who are improving both population and individual health. CCHMC, renowned for children’s cancer care, is now working tirelessly to reduce health disparities in the local Cincinnati community. Its Community Health Initiative, led by program director Robert Kahn, is using comprehensive data collection to implement preventive measures against injury and illness.

An early example from this data collection indicated that particular Cincinnati neighborhoods had high rates of childhood asthma whereas other neighborhoods had virtually none. Neighborhoods with more asthma cases tended to have poor housing conditions, and more families without medical insurance and access to medicines. Since such factors are difficult to detect during a 10-minute conversation in the exam room, CCHMC’s Community Health Initiative partnered with the Cincinnati Health Department and Legal Aid to provide home inspections and legal advocacy. Preliminary data collection, therefore, enabled pattern recognition which led to problem solving and a larger, more sustainable impact on the community.

CCHMC’s commitment to health, not just health care, extends to their James M Anderson Center for Health Systems Excellence where a dedicated team of individuals is re-thinking chronic illness care. For the past several years, Lybba has been working side-by-side with CCHMC’s Anderson Center on the Collaborative Chronic Care Network (C3N), which is using software-based data collection tools to enable patients with chronic illness to become more active participants in their health and to spread discovery amongst doctors and hospitals.

C3N has reported significant increases in remission rates for patients with Inflammatory Bowel Disease (IBD), without the use of new medications. A few weeks ago, C3N was awarded PCORI funding to continue their transformative work in IBD. To learn more about C3N and Lybba’s involvement, visit c3nproject.org.

Read the Forbes article here.

A mother’s perspective on caring for a child with Crohn’s disease

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In response to the Healthier Together campaign to support collaborative care for IBD, Lybba board member Stacy Dylan wrote a letter about her and her son's experiences with IBD.

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My 13-year-old son, Lowell, has Crohn’s disease. He was diagnosed at age two, after we saw a gastrointestinal doctor and Lowell had a colonoscopy and endoscopy.

Lowell has been on many medications, and at times his disease was well controlled. However the past three years have been the most challenging: hospital stays, tube feeding, TPN, medication injections, endless medical tests, procedures and appointments both in Los Angeles, where we live, and out of state.

Over the years, I have learned so much about Crohn’s disease and every aspect of Lowell’s treatment. In a sense, I became an expert at each phase of his care. I shared valuable information about my son with his doctor, information that is crucial to his ongoing treatment and care. I reached out to parents who had been through similar experiences with their children, and then parents started reaching out to me; even my son’s doctor asked me to talk to parents whose kids were facing treatments Lowell had already been through, such as a new injectable medication or tube feeding. Unfortunately, there is no shortage of newly diagnosed young children with Crohn’s.

I began to create my own informal network. I was involved in IBD charities and met even more people. In 2010, I decided to join Team Challenge, the endurance and fundraising program of the Crohn’s and Colitis Foundation of America, and started training for, and participating in, half marathons and triathlons. Along the way, my network expanded. I learned from the challenges of other parents and patients, and also helped them face those challenges. I felt connected. I had a community of people who understood. And I felt less alone.

Seeing me create a network of support, my son Lowell has become more open sharing his disease experience. He even made a video showing how he inserts his NG tube to share with other kids, parents and doctors. On most days, although facing challenges most kids his age would never have to confront, Lowell perseveres—participating in normal kid activities and maintaining his sense of humor.

While my son is not a patient in an Improve Care Now (ICN) clinic, I learned about the data sharing and tools these clinics are using to improve patient outcomes for pediatric IBD patients. Tracking symptoms, peer to peer support, community sharing of information—these are the things that create a more informed and connected patient, while increased remission rates let doctors know that this kind of sharing works.

Networks such as ICN are an invaluable tool, and prove that people coming together around a shared experience increases well being, good health and a strong sense of community. Each person’s voice is heard and valued, so both patient and doctor feel supported.

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Let’s get healthier together

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Health is a team effort involving patients, families, care teams and researchers. It isn’t a one-way conversation in which a doctor makes a decision that a patient, without question, accepts.

Healthier Together is a campaign that encourages a collaborative approach to healthcare. Collaborative care unites the knowledge of patients and families, nurses and doctors, pharmacists and researchers in order to gain a fuller picture of each patient’s health. The result? Superior care for everyone.

Networks like ImproveCareNow are at the forefront of this new model of care. ImproveCareNow uses collaboration and data to drive improvements in the care and health of kids with Crohn’s disease and ulcerative colitis.

In partnership with ImproveCareNow, Lybba has built Healthier Together to support collaborative care. We’re collecting statements and stories in support of such care, and to demonstrate the value of networks like ImproveCareNow —not just for kids with Crohn’s disease and ulcerative colitis, but for all patients with chronic illnesses.

Our goal is to collect 1000 statements by September 15. Your voice will help change the way we think about healthcare in America!

We need your voice. Visit HealthierTogether.org today and take a moment to share your story about how collaborative care has helped you or a loved one. 

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Our favorite photos from Gather

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Last week, we posted a recap of our first Lybba Gather event, “The Art & Science of Noticing.” Once again, we’d like to say a big thank you to everyone who came together to support Lybba’s mission and engage in an inspiring conversation about improving our healthcare system. Please enjoy the slideshow above, and be sure to sign up for our newsletter at the top right of this page to be the first to know about our next Gather event.

Learn more about the wide range of services Lybba offers and browse examples of our work here.

The Art & Science of Noticing: Lybba hosts its first Gather event

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Photo by Al Kamalizad.

Lybba’s first dinner and conversation experience, held last night in Los Angeles, inspired an evening of insightful and delightful community for 50 cultural influencers who have a steadfast interest in chronic healthcare. The event was part of an ongoing series called Gather.

Featured speakers, Lybba Founder Jesse Dylan and Dr. Peter Margolis of Cincinnati Children’s Hospital Medical Center, in a conversation moderated by Lybba Executive Director David Fore, illuminated transformations in care for pediatric Crohn’s and colitis, as well as for chronic care as an entire system of thought. Discussions centered on the challenges faced by those connecting clinicians, researchers, and patients in a shared system of care, and the potential for expansion of chronic care networks.

The journey of a thousand miles, so goes the proverb, begins with a single step. Those of us involved in transformative-systems work know that one of the first steps to enacting a paradigm shift is to ask individuals to do a simple thing on a large scale: to notice. Our first event was thus entitled The Art & Science of Noticing

Guests were treated to artisanal cocktails; films were screened throughout the evening; giveaways included Lybbaverse magazine, a special edition curated to the theme of the event, and origami lotuses created by Arnold Tubis, lifelong origami artist, physicist, and author of books on paper folding. 

Our hope for Gather is that guests will experience a paradigm shift in awareness about their own health and the system of standard chronic care in the United States.