The Lybbaverse  

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.

I am a scientist

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Lybba is thrilled to have just released the film I Am A Scientist, to inspire youth about the benefits of science, technology, engineering, and mathematics (STEM). Released in collaboration with The California Endowment, California Biotechnology Foundation, and the California Department of Education, the film explores how STEM education can open up career opportunities in the life sciences, particularly for students from disadvantaged socioeconomic backgrounds.

The film chronicles a day with students from L.A.s Manual Arts High School at the biohackathon that Lybba conceived of and created. Inspired by traditional hackathons by computer programmers and software developers, our biohackathon offered students a real-world DIY science experiment. Lybba’s partner, Wondros, captured the whole day on film, and this footage is the main backdrop of I Am A Scientist.

“The biohackathon was a hands-on, immersive experience that yielded palpable energy and excitement from the students. I was inspired by their imagination and wonderment as they explored outside of their comfort zone,” said Jesse Dylan, founder of Wondros and Lybba. “These students are genuinely passionate about pursuing careers in science, medicine, and research.”

Events like the biohackathon and films like I Am A Scientist strive to create the next generation of health and science leaders. “At the California Endowment, we know that health and academic achievement go hand in hand. This film gives students the opportunity to share how they’ve been inspired by STEM education and that’s the most effective way they can encourage their peers to consider the life science field as well. That’s how healthy communities are built,” said Kathlyn Mead, Executive Vice President and Chief Operating Officer of The California Endowment. “We want to help students find their passion and to get a sense for what’s possible in the future.”

Enjoy the film and spread the word!

 

View the press release for I Am A Scientist 

Learn more about Lybba's Biohackathon projects

 

 

Help my daughter give back to other kids with Crohn’s disease on Kickstarter

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ZaralynShirt

My daughter Sabina was diagnosed with Crohn’s disease in 2011 and, as a result, has experienced significant heath issues and hospitalizations. Through drawing and art she has found a much-needed diversion from the many difficult and painful moments she continues to endure. The role of drawing and art in her life sparked the idea of putting her drawings on t-shirts. Her project, Galixee, was born. Then, during a hospital stay, she discovered that companies often give things to kids struggling with illness, as a way to cheer them up. Having felt the impact of such giving first-hand, Sabina wanted to pay it forward. Her vision is to create a Galixee Gives Back Program at local area hospitals. This program will provide Galixee merchandise to kids who have extended hospital stays due to chronic illness.

This is Sabina’s project and her vision. Please lend your support on Sabina's Kickstarter page

 

Reflections on ‘Death in the Time of Twitter’

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Scott Simon Tweets

The article “Death in the Time of Twitter, Or, How we Grieve Now” moved me and caused me to reflect on my own mother's passing. For several months, my mom's health had been in slow decline, on its way to an inevitable conclusion. I shuttled back and forth to the tiny Ohio town where I grew up to be by her side as much as possible. She didn't always recognize the friends and family members who came to visit, but she always knew me.

In an odd way, it was comforting to be in the isolation of my small town. But I also found myself reaching out to people in whatever way I could. Most often this was via the tiny computer that fits in the palm of my hand, that I carry everywhere. It wasn't that I really had any news to share. Certainly not any good news, other than that each day brought my mom closer to the end of suffering. But the very fact that I could share something, anything, with others was unexpectedly comforting. The simple words and thoughts I received back sustained me.

What I took away from those bedside days is this: We live in an amazing time, where technology has enormous (and yet still largely untapped) power to heal us. And yet we don't have to be connected all of the time for that healing power to touch us. We just need it at the right time. "Always on" is nice, but "always there" might be even better.

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.

Stacy_Lowell

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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