LOOP Blog

What is the Patient Advisory Council (PAC)? You may already know, but the PAC is a group of young patients with Crohn’s disease and ulcerative colitis (collectively known as Inflammatory Bowel Disease, or IBD) from across the country who are passionate about being IBD advocates and taking an active role in making care better for all children and youth with IBD. As a member of the PAC I get to work alongside many patients who are nothing short of incredible, inspiring people. We all have different stories of IBD battles and we all lead very different lives but we share two traits – we have IBD and we have a passion for making a difference. Our differences, combined with our passion, make us a powerfully unique group.

10 years ago this past summer, I was a shy, rather-little boy sitting in a post-op room in the hospital hearing the words, “You have Crohn’s disease.” I had no idea what Crohn’s was at that time, why I had it, or what it meant for my future. I won’t go into my diagnosis and battle story, which we hear versions of so often. Instead, I want to focus on what this disease has done to my life that I’m grateful for. For the first four years after my diagnosis, I didn’t want anyone to know outside my family. I was embarrassed and just wanted to be “normal”, but who could blame me? I still have yet to really figure out what would be considered “normal”, so if anyone knows please let me in on the secret.

After those four long years of suffering in silence, I realized I could continue sitting around waiting for change to come and for things to get better, or I could get involved and help change things for the better myself. 

Much about Thanksgiving is the same year to year. People come together with friends and family and community, often enjoying a large meal together, and spending the day doing something meaningful—whether doing community service; watching football; or sitting around talking, telling stories, and recovering from the large meal. But while many things about this day of togetherness and gratitude remain constant each year, our personal roles may shift. Sometimes we host the meal at our home. We are the “leaders” for the day, developing the menu, doing most of the cooking, deciding when the group will eat, assigning tasks in the kitchen, and choosing which football game will be on. Other times, we are a guest in someone’s home, often traveling some distance, we are told which side dish to bring, when to arrive, and which activities are planned for the day. Sometimes we are grateful to play a supporting role in the production, and other times it can be hard to sit back and watch events unfold differently than they would if we were in charge. Maybe the mashed potatoes don’t taste just like our Thanksgiving memories, maybe our family always took a walk after eating and we’re antsy to do the same, and maybe the wrong football game is on TV (or we just can’t stand watching football at all).  Or maybe it’s just perfect—just the break we needed from running the show – and we bask in the glow of learning new ways of doing things and watching others shine.

Project WOW (Wear an Ostomy for the Weekend) was created to help the ImproveCareNow Community learn more about what patients wearing ostomies go through on a daily basis. The Parent Working Group (PWG) and Patient Advisory Council (PAC) wanted to create a learning opportunity where we could work together. We knew this project would only give a snapshot of what patients go through because participants wouldn't have had surgery and the ostomy wouldn't be functional. But we still believed it would be powerful because participants would be learning from perspective, spending some time "walking in patients' shoes", which is something often times difficult to accomplish and not easily seen.

The C.S. Mott pediatric IBD team hosted its first engagement meeting. Our first meeting brought together a group of parents, patients, doctors, nurses and improvement coordinators to learn about and share what goes on behind the scenes in our IBD clinic. We designed it as a safe place to ask questions and provide feedback, meet and mingle with others, and (very importantly) gave parents and patients the opportunity to choose if they want to be involved in any of our efforts.

I am just over three months into my first year of medical school. I love it, really, I do. Every day is different and a new kind of challenge, causing me to both embrace and restrict change as I become and remember who I am.

Of course, one contributing factor to who I am is my ulcerative colitis. It rarely feels like a Disease, with a capital D. It is less of a dinosaur than a dandelion these days. Usually barely noticeable but ubiquitous in my fields of thought. But then, the slightest trigger of an associated idea or memory creates a flurry of emotion I can’t help but acknowledge.

What is ImproveCareNow? ImproveCareNow is a Learning Health Network. OK, great. But what does that mean and why is it important? 

Patients, parents and doctors – we are all humans and want to know each other as such. This has been a common theme that I have seen emerge from Community Conference pre-work and in conversations I’ve had around engagement. Patients and parents want to connect and view their care providers as real people; they want their care team to know who they are beyond just a diagnosis. The focus is on feeling normal and being connected, and how that is defined differs a bit in each case.

“A journey of a thousand miles begins with a single step” – Chinese philosopher Laozi, 6^th century BC

With great admiration, I have been witness to the strides that ImproveCareNow (ICN) has been making in our research efforts. As co-chair of the Research Committee, I am able to observe all of the wonderful ideas that the community puts forth for consideration. As with any learning curve, every step is not smooth, and we occasionally stumble and fall. Our colleagues are next to us ready to offer a helping hand though.

The variation in presentation of ulcerative colitis (UC) during childhood has been incompletely characterized. In October, at the NASPGHAN Annual Meeting, Dr. Jeremy Adler (@jeremyadlermd) presented an abstract on behalf of ImproveCareNow, which highlights the characterization of the extent of disease at presentation of UC in a large cohort of pediatric patients using data from the ImproveCareNow pediatric IBD registry (known as “ICN2”).