IGNITE - A Parent's Perspective on Healthcare Learning Networks

Ignite Talks are a true highlight of ImproveCareNow Community Conferences - whether we are meeting in-person or live online. This spring, at our Live Online Community Conference, we were honored to listen as Jane Weyer shared her personal story as parent to a child diagnosed not only with Crohn's disease, but also Primary Sclerosing Cholangitis (PSC) - an autoimmune liver condition affecting around 30,000 people in the US. Jane, and her daughter Nicole, didn't have the information or resources they wanted at the beginning of their PSC journey. So, they rolled up their sleeves, leaned on the strong foundation of connection and improvement built by the ImproveCareNow Learning Health Network, and together with other visionaries founded A-LiNK (the Autoimmune Liver Disease Network for Kids). A-LiNK Connections, the caregiver/patient community, was established to collaborate, advocate, support, and educate families on this journey with them.

Be inspired by Jane's #IgniteTalk 🔥

I’m walking down the hallway of Cincinnati Children’s Hospital Medical Center- it’s really early in the morning and the lights are extremely bright. I'm standing next to my daughter’s stretcher and I’m trying to keep a smile on my face. As we approach the double doors to the OR, I give Nicole’s hand a big squeeze and I kiss her head and tell her that everything is going to be OK. I’m smiling as I say “I love you! You've got this”! As the doors close, I turn around and see her dad sobbing. I knew in that very moment that this was on me…that I had to stand tall and strong and help Nicole handle whatever was to come next.

Hi, I’m Jane Weyer and I am so honored to be here today.

That vivid memory is from June 16, 2016, the day after my daughter Nicole turned 17. Yes, she got to prep for her first colonoscopy on her birthday and the next day she was diagnosed with Crohn’s disease. She had not been sick for long- in fact she only felt bad and had diarrhea during exam week as she finished up Junior year of high school. We thought it was just stress, but after she finished exams, we took her to her pediatrician and her labs were “off the charts”. He quickly got her into Cincinnati Children’s and within a couple of weeks she was diagnosed. And as she started on the road to remission with a 4–6-week course of Prednisone, there was something else going on.

The doctors were concerned about some other abnormal labs not explained by Crohn’s, so she needed more tests. The first MRI and ultrasound showed dilation of the bile ducts, then several more weeks went by and an MRCP showed findings suggestive of “sclerosing cholangitis in the setting of IBD”. Dilation/ Beading/sclerosing. What? I’ve never heard of that. But it wasn’t a diagnosis yet- they wanted to do a liver biopsy. Maybe she has Primary Sclerosing Cholangitis? Autoimmune hepatitis? Or both? Now I’m scared. I don’t know these diseases.

Nicole had her senior pictures taken right before her liver biopsy. Here she is… a happy, healthy, beautiful 17-year-old. Right? She had just started her senior year of high school and was focused on figuring out where she wanted to go to college after graduation.

And on this day, she was diagnosed with her second chronic autoimmune disease, primary sclerosing cholangitis or PSC, a rare liver disease that damages the bile ducts inside and outside the liver leading to scarring, narrowing, and blockages eventually resulting in liver failure.

We got the biopsy results on MyChart. There may have been a note from the hepatologist confirming the diagnosis. That was it. No call. No appointment. By then we had started receiving a lot of information on IBD and Crohn’s Disease from the GI team. And I mean a lot! A binder…we were handed a binder- or maybe two! But for PSC, a rare disease that affects approximately 30,000 people in the US, nothing.

I had to call to ask to talk to the hepatologist because I had questions. I had to start doing research on my own, and within two weeks of Nicole’s diagnosis an article came out in the New England Journal of Medicine on PSC. I wrote the author Dr. Nick LaRusso at the Mayo Clinic. He responded to my email, and I was able to have a conference call with him. He assured me that Nicole was in good hands- no, great hands! Dr. Bezerra was the best! But why was this so hard? So began my journey of discovery- I wanted to know everything about these diseases. And for IBD I started to find out about learning networks, collaboration, research, education, and advocacy.

When I first heard about ImproveCareNow I was trying to make sense of all of the resources available. I had no intention of “joining” or participating, I just wanted to learn about how to take care of my daughter. I am a single parent, a working professional, and back then, I was traveling for work. Why would I want to listen to webinars, go to conferences, or be on committees? Because, as I came to find out, ICN works. A learning network such as ICN pulls everyone together; not just the healthcare professionals and researchers, but the caregivers and patient advocates like me, and the patients like Nicole. It is a true “learning” network- where information is shared including best practices, tools are developed for patients, and it’s a place where we laugh, and joke, and cry….and we all have a voice, and a seat at the table. Everyone has the same goal of improving care and outcomes. I learned in ICN that there is a great benefit when we all share our knowledge, experience, strength, and hope with each other. It’s very powerful.

So, I threw myself into the ICN PWG meetings, as well as our local chapter of ICN called IBDevoted and I found immediate support and developed new friendships. I got to know the practitioners at Cincinnati Children’s better, including Nicole’s GI Dr. Denson and his nurse Renee, because we collaborated on QI projects. I served on the local CCF Board for a couple of years. Nicole’s Crohn’s was in remission- and that was great, but there was something nagging at me- we had all of this going on for IBD- great collaboration, education, research, and support…but what about PSC and other autoimmune liver diseases?

That’s where the story gets interesting! 

One of the hepatologists at Children’s Dr. Alex Miethke connected me with a woman in Cincinnati whose son had been diagnosed with PSC and AIH. He gave me her name and number, and as fate would have it, we already knew each other- our kids had gone to the same middle school. We met for coffee, we commiserated, and from that day forward, Chris Browner and I were joined at the hip and on the journey together.

I learned from Chris that The Center for Autoimmune Liver Disease or CALD, had been established as a Center of Excellence at Cincinnati Children’s with the support of Chris’ family and practitioners like Dr. Miethke who recognized the need for a focus on kids with rare autoimmune liver diseases like PSC and autoimmune hepatitis. PSC has no approved treatments or cure, and there are no standards of care. Chris and her family were not satisfied with that, and neither was I. So, over the next couple of years we met, we schemed, and we applied for grants.

We realized that we wanted to do for PSC and AIH what ICN was doing for IBD. We wanted to create a healthcare learning network so we could collaborate, advocate, support and educate. By March 2020, with the help and support of ImproveCareNow and CALD, A-LiNK (Autoimmune Liver Disease Network for Kids) was formed as a trailblazing group within ICN with 11 pilot hospitals. We also established A-LiNK Connections, the caregiver/ patient community, and Chris and I are parent co-leads and Nicole and Fionna Kopp are our fabulous patient co-leads.

So, what are some of the things A-LiNK Connections has accomplished in three years?  We have grown our parent/patient community from 2 to 31 members. We have held 16 formal monthly A-LiNK Connections meetings; we have created and distributed an A-LiNK brochure to be used in our hospital clinics to engage new patients/parents (thanks Maria Lester!); we presented at the 2022 annual CALD Symposium- a wonderful session on Mental Health and the impact of chronic disease on patients and caregivers; we participated in developing model care guidelines for PSC/AIH- not an easy task for diseases with no standards of care; we have participated in PSC and AIH monthly Work Group meetings (working on QI efforts like Pre-visit planning); we helped create the template for the data we want to be collected on our kids for use in future research.

And A-LiNK Connections has already taken part in national and legislative advocacy efforts- on issues like the use of oral vancomycin in the treatment of PSC, and efforts to get an important bill into the Senate-HR 6160-which would benefit patients with rare diseases like PSC by requiring insurance companies to expedite insurance reconsideration and appeals of any denial of coverage for a medication.

Here are some pictures to highlight our efforts:

I’m especially proud of our work on a new patient education manual that we are developing as a resource for physicians to give to newly diagnosed patients and their caregivers. Soon all A-LiNK hospital patients diagnosed with an autoimmune liver disease will be given a resource to go home with to answer all of their questions about PSC and AIH. We don’t want any parents to feel lost and alone searching for answers like I did when Nicole was diagnosed with PSC.

Finally, I would be remiss if I did not mention the monthly support group that we started in collaboration with the Autoimmune Hepatitis Association- because we know that taking care of ourselves is as important as taking care of our kids. If I’m not healthy and in a good place mentally, I can’t be there for Nicole. I look forward to talking to parents in this group once a month, whether their child is newly diagnosed, or we’ve been meeting for years, because I find that by supporting and helping others, I get relief from my own fears and anxiety. With this abundant support I am able to get up every morning and do it again, one day at a time.

I have always related to the saying from Shakespeare’s A midsummer Night's Dream- “Though she be but little, she is fierce!” And I know that together in ICN and A-LiNK we are even stronger. We share experience, gain insight and understanding, develop best practices, advocate for and effect change. Because at the end of the day, we all want the same thing. We want to improve care for our kids. We want them to grow, thrive and be happy.

But all of this work, the collaboration/ networking and support groups, and quality improvement work, has given me purpose and the strength to stay positive, and to look forward to a very bright, happy and healthy future for my family.

Nicole and Drew’s future is clearly bright, and the future is bright for you too! Thank you!

My sincerest gratitude and thanks to ICN and Anderson Center leadership- Peter, Kristin, Shehzad, ICN staff, my friends in the PFAC and PAC, CALD and A-LiNK leaders- Drs. Taylor, Miethke, Squires, my co- leads Chris, Fionna and Nicole, thanks for being on this journey with me.

💚💙

Want more 🔥 Ignite? Read all Ignite Talks from patients, parents & clinicians.

Feeling like it's time to take action? No effort is too small, because everything we do in ImproveCareNow is magnified by the efforts of thousands of other improvers, and together we bring about a better quality of life for many. Here are some actions you can take, or invite others to take:

• Invite someone to stay #InTheLOOP with IBD stories on the ICN blog - "Sharing stories and experiences is affirming and validating. Our stories reach others and they help, which is the most wonderful part of being involved with ImproveCareNow." - Quint 

• Invite a patient (14+) to join the Patient Advisory Council - "Being part of the PAC helps me remember that I'm not alone in this journey." - Rhea 

• Invite a parent or family member of a child with IBD to join the Parent/Family Advisory Council - "I was astounded by the instant bond established with parents I had never met. Every conversation provided me with strength. It ignited another purpose in my life." - Maria

• Invite someone to download free, co-produced IBD resources - "Physical resources provide patients with actions that we can take toward bettering our quality of life, as well as our current and future care." - Quint

• Invite someone to Join Our CIRCLE - "Resources we found in CIRCLE eNews do not just focus on physical health, but also on critical areas like social-emotional needs, nutrition, back-to-school planning and mindfulness. These are valuable tools for my son to remain healthy." - Lisa