The Lybbaverse / crohns  

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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Case Study: C3N & Lybba help kids with Crohn’s disease

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Client: C3N (Collaborative Chronic Care Network)
 
Based out of Cincinnati Children’s Hospital Medical Center, C3N assists pediatric patients with IBD. Patients and clinicians work together to develop data collection tools, protocols and reports that determine individualized combinations of treatments and lifestyle modifications. By providing a controlled environment for patients to experiment, C3N supports patient activation and encourages self-directed care, while allowing doctors to improve the quality of the clinical experience.
 
The Challenge
 
For patients to participate fully in the C3N, they need to be able to interact with each other, communicate with their clinical care teams, keep track of their symptoms and manage their treatments. C3N needed to provide accessible tools for both patients and care teams to engage both in and out of the doctor’s office.
 
The Strategy
 
Lybba created the C3N platform to help patients track their health between appointments, visualize their health over time via clear and engaging graphics, more easily communicate with their physicians using online and mobile applications, and even choose to share their medical data with other patients and researchers. The system also provides a support mechanism for parents and a quick, easy way for researchers and clinicians to get the data they need to make quality improvement decisions in relation to the care of their patients. By increasing patient engagement, the C3N can transform the experience and outcomes of illness, and accelerate the discovery and application of new knowledge.
 
The Results
 
By combining large data registries and making them accessible and interactive, the C3N Project drives action and innovation to create a more reliable and accountable care delivery system for children and their families dealing with chronic gastrointestinal diseases.  Since beginning in January 2010, C3N has:
  • Assembled a diverse team of experts from medicine, public health, psychology, computer science, film, design, law, sociology and economics. 
  • Created an initial innovation network of more than 100 patients, clinicians, and researchers - all contributing actively to the C3N for IBD. 
  • Designed and put into prototype testing 14 innovations.
  • Won a $12 million grant from the US Agency for Healthcare Research and Quality to build the data and informatics infrastructure for the C3N data network.
  • Put into practice policies for overcoming barriers such as concerns about intellectual property, data sharing and privacy, and medicolegal liability. 
  • Designed the architecture and specifications for the communication and technology platform necessary for patients, families, clinicians, and researchers to collaborate. 


See one patient's success story here.

In the LOOP: Celebrate World IBD Day

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Saturday, May 19, is World IBD Day – a day set aside for raising awareness about Crohn's disease and ulcerative colitis (known as "Inflammatory Bowel Disease" or "IBD"). These chronic illnesses affect millions of people worldwide, and currently there is no cure. The work of Lybba's partner organization, ImproveCareNow, however, has increased the percentage of kids in remission (feeling well, no symptoms, fully active) from 50% to over 75%, without any new drugs.   

Just in time to help celebrate World IBD Day, ICN is launching its official blog – LOOP! We all have a voice – patients, parents, clinicians and researchers –  to share our stories, ideas, and innovations. The organization will join the global conversation about IBD, and about improving care and outcomes for those who are living with these chronic illnesses.

ICN is currently 36 centers strong and growing. Its goal is to deliver the ICN standard of care to all kids in the US with IBD, so 10,000 feel well instead of sick. You can help them reach this goal. Visit LOOP and help spread the word and raise awareness about IBD, this weekend.