Using ICN Data to Investigate Health Disparities in Children and Teens with Crohn’s Disease

[Editor’s note: One of the unique aspects of research in a large network such as ImproveCareNow (ICN) is the opportunity for collaboration.  Jennifer Dotson and Michele Cho both submitted protocols to the ICN Research Committee to study racial disparities in pediatric patients with IBD.  Both are young eager investigators.  The Research Committee helped make a connection, and the result has been the start of important collaborative research utilizing the ICN2 registry.  This work exemplifies the power of the ICN network: the power of people and the power of data.  I hope you enjoy reading about the outcomes of their work.  Steve Steiner, Co-Chair, ICN Research Committee]

Kids in a circle on the grassUsing ICN Data to Investigate Health Disparities in Children and Teens with Crohn’s Disease

By Jennifer L. Dotson, MD, MPH and Michele Cho, MD

Health care differences due to race have been shown to contribute to suboptimal healthcare outcomes for minorities and low-income groups. Identifying differences among those at-risk is an essential step to improve healthcare delivery and ultimately outcomes, and to reduce costs for all patients. For our study, we wanted to look at racial differences during the initial presentation and medical management of children and teens with Crohn’s disease. Specifically, we wanted to determine if there were differences in disease severity and treatment with medications between Black and White children at time of diagnosis. The ImproveCareNow (ICN) network gave us the opportunity to look at a large group of patients from across the country and was a valuable tool in facilitating this work. ICN contains data collected at the time of outpatient clinic visits and is able to track patients over time. Data was pulled from the ICN database for all patients under 21 years of age with clinic visit between September 2006 and October 2014. We then narrowed the list of patients by including only those that had a visit within 90 days of their initial Crohn’s diagnosis.

We are in the early stage of this study and would like to share some of our preliminary results.

There were 1728 patients (Black=222 (13%), White=1506 (87%)) from 46 sites included. The average age was 13 years and 62% were male. Black children had more Medicaid insurance (39% vs. 10%) than White children. There were no differences by nutritional status, body mass index, or growth status. There was no difference in disease activity based on the short Pediatric Crohn’s Disease Activity Index, however Black children had more severe disease based on Physician Global Assessment. 0.9% of Black children had perianal disease as compared to 0.5% of White children. Anti-TNFα therapy (medications such as Remicade or Humira) was more commonly prescribed for Black children (17% vs. 11%).

Racial and socioeconomic disparities have the potential to impact healthcare delivery and Crohn’s disease outcomes. This study identified several differences among newly diagnosed children and teens with Crohn’s within an outpatient quality improvement network. Specifically, Black children were more likely to receive treatment with anti-TNFα therapy than White children. This difference does not appear to be explained by differences in age, growth, nutrition, perianal disease or standardized disease severity scores, but rather by subjective assessment of disease severity and/or consideration of additional information such as endoscopic appearance that is not accounted for by the short Pediatric Crohn’s Disease Activity Index.

ICN helped make this research project a reality by providing a rich data set and facilitating a successful collaboration of two young physician scientists. Realizing we had similar research interests in health disparities, we decided to combine our efforts and focus on a single, large project together. We are delighted to be working together on this, along with our mentor team, and are thankful for the encouragement by the ICN network.

Jennifer L. Dotson, MD, MPH is a pediatric gastroenterologist and research studying racial disaprities in IBD care using the ImproveCareNow registry.Jennifer Dotson, MD, MPH, is a pediatric gastroenterologist and principal investigator in the Center for Innovation in Pediatric Practice at The Research Institute at Nationwide Children’s Hospital, Columbus, Ohio. She conducts clinical research focusing on improving healthcare delivery and reducing healthcare disparities, and outcomes-based research in children with inflammatory bowel disease (IBD). Her interests are studying hardships and barriers to care, and assessing potential health system solutions from the patient/caregiver perspective that impact clinical outcomes for children with IBD. When she is not taking care of patients and conducting research, she loves traveling with her family and spending time doing activities outdoors (hiking, kayaking, etc.).

Michele Cho, MD is a pediatric gastroenterology and research studying racial disaprities in pediatric IBD care using the ImproveCareNow registry.Michele Cho, MD, is a pediatric gastroenterologist working in the greater Chicago area. She is part of the Center for Children’s Digestive Health and is the physician lead for ICN at her site at the Advocate Children’s Hospital in Park Ridge, IL. Outside of work, she enjoys running and participating in other outdoor activities. She is looking forward to summertime in Chicago.

Michael Seid #myICN

Michael Seid supports ICN for his daughter.If you’re a parent, you know. You know what you’d do for your kids. If your child is diagnosed with a chronic illness, you discover that you’d do even more.  Until a cure is found, part of what you’ll have to do is work closely with your child’s doctor and care team. This can be hard and intimidating but everyone knows the best care comes from everyone partnering together – communicating honestly, sharing the work, pushing each other towards the goal.

Have you seen our health care system? It doesn’t always work that way. But imagine if every interaction with your child’s care team felt exactly like that – like you were part of the best team in the world. And your team had access to knowledge and wisdom from other best teams in the world. World class teams networked together to make things better for your child and all kids who suffer? That’s what ICN is building. And you know what’s even better? Having the opportunity to work with ICN to make this happen. That’s why I’m part of ICN – we’re the cure for waiting for the cure.

Notes from the Field – The ICN Engagement Campaign

What does an engagement campaign have to do with a healthcare quality improvement network? ImproveCareNow leaders were wondering the exact same thing before we began learning from our friends at 270 Strategies (experts in both political and issue campaigns!) Their team is teaching us how to apply successful campaign strategies to engage a large and diverse community of people in helping kids with IBD get better, now. Quite simply, ImproveCareNow invites clinicians, parents, patients, researchers, and others to learn about our work and to lend their time, talents, and expertise so together we can learn and find innovative new ways to outsmart IBD. And right now we’re learning how to make it easy for everyone to connect with ImproveCareNow in the ways that work best for them and ensure we can harness and value each person’s unique and generous contributions – making it meaningful and rewarding to be a part of our community.

ICN is made up of many faces. This slide shows a just a few of them.In ImproveCareNow we always start with a small test. To that end six of our centers are diving in as campaign pilot centers. Cincinnati Children’s Hospital Medical Center, Children’s Mercy Hospital, Children’s Hospital of the King’s Daughters, Children’s Hospital of Philadelphia, Levine Children’s Hospital, and the University of Michigan CS Mott Children’s Hospital are getting some training, rolling up their sleeves, and re-framing what an ICN IBD team looks and feels like. You will hear more about their journeys in the coming months as they build momentum and start sharing what they have learned with the rest of the community. In the meantime, we wanted to highlight some of the work underway in the early days of the campaign so that you can begin to learn with us now:

Snowflakes and ImproveCareNow

Campaign pilot centers are beginning to reframe their ICN teams with the “snowflake model” in mind. The snowflake model is a way of organizing people that decentralizes leadership and increases two-way communication. Basically it makes it easier for everyone to share the work and contribute to the success. These centers have found that creating a snowflake does not necessarily mean more work for the existing team, rather, it often involves reassigning people in ways that make it easier to get existing work done more efficiently.

This slide shows a diagram of what a snowflake staffing model would look like at an ICN Care Center.

“Hard ask?” – that sounds hard!

As part of their training, the participating centers are learning that it’s OK to be really direct about what they need from potential partners. It is lot easier to say no when the ask is soft and non-specific. So rather than saying “Umm…I was thinking maybe you could help us out somehow in the next few months,” they are looking for ways to be very concrete when asking for help, “Please come to our QI meeting next Tuesday. We really need your input on our new diagnosis process.” Coordinator Cori Davis tweeted about her first hard ask. The answer was YES!

Everyone’s story matters, and is important, and can change someone else’s story.

More than ever, we are seeing how stories are key to helping potential partners understand what ImproveCareNow is all about and how they can fill important gaps in the community. Our Spring Community Conference is just around the corner and we are seeing some inspiring stories as part of the pre-work, stories that make very clear just how much our Network attracts those who want to join in and become a part of our success.

Elizabeth Monti shares her ICN story.

What this means to patients and families.

We know that growing our community will only make us stronger…indeed, the theme of our Spring Community Conference is “Strength in Our Numbers”! In her beautifully written LOOP post ‘Breaking a Promise’ Sami Kennedy really drove this point home. She reminded us why being part of ImproveCareNow is important and empowering for individuals, just as it is important to the whole community. As she says, “I have been welcomed into an environment where I am encouraged to not only sit at the table, but also to stand up and address the whole room.” Sami and Jennie

Meanwhile, we still have a lot to learn.

As the campaign unfolds, the ImproveCareNow leadership team knows it has an enormous responsibility to continue to ensure the network’s success, and to help develop a system that offers tools and opportunities for co-producing health and real partnerships. And we will be the first to admit, we have a lot to learn! We need your input as we go. We want to have open, transparent discussions about the challenges and opportunities ahead so we hope to engage more of you on twitter and other social media venues to take part in an ongoing dialogue between Community Conferences and webinars. You can follow @myers3411, @michaelseid11, @PeterAMargolis, and @improvecarenow on twitter and weigh in with your feedback and concerns as we build a bigger, better community together.

Sarah Myers tweets about the work of co-producing the conference agenda for the Spring 2015 Community Conference (#ICNCC15S)