LOOP Blog

Out of all the talks at the ImproveCareNow Spring 2015 Community Conference none made my heart beat a little faster quite like those delivered by Patient Advisory Council Co-chairs Sami Kennedy and Jennie David. The ability of these two ladies to shine a light directly at the heart and soul of ImproveCareNow is uncanny and uplifting. I challenge anyone reading this, Jennie's speech, to not break into a face-splitting grin (and/or run right out to change the world).

For anyone momentarily struggling with the thankless monotony of changing the healthcare system - I would prescribe the following: read a speech at bedtime and resume improving care now in the morning. Repeat as needed for maximum benefit.

They're a bit long so I've shared Jennie's speech below and will share Sami's in a separate post. Enjoy!

There is a cold tradition in medicine of an unaccommodating hierarchy, where the doctor is installed as the superior and the patient as the inferior. Under the mechanical demeanor of navigating such medical appointments, the whole thing – being exclusively a patient or a doctor, sick or healthy, needing or giving – seems ridiculous and illogical. Outside the sanitized walls of the hospital, I am a person complete with hopes and fears, and yet inside a hospital room – moreover, on an exam table – I am a specimen of my disease, a list of medications, a compilation of surgical scars. There’s a marked lack of apologies or prerequisites for doctors to perform examinations, ask invading and uncomfortable questions, and inflexibly dictate treatment, the flimsy but bold idea that it was all just ‘good business’ woven throughout it all.

I fought against this notion of paternalistic care throughout my pediatric care, routinely clashing with my doctor, the tense encounters punctuated by his passive aggressive sighs and sometimes me crying. I believed in the idea of doctors, patients, and parents working together, but it was much like a wish over birthday candles than anything I knew existed in reality. I kept this starry-eyed but unrealized medical vision in mind, and was consistently underwhelmed and disappointed in medical care that failed to detect my soul within my diseased body as the years swept by.

And then I – quite literally – stumbled across ImproveCareNow. Admittedly, I was enchanted with notion of such a collaborative network, but it somehow seemed too saccharine, too futuristic, too implausible. Having been a patient advocate for several years before discovering ICN, I was used to fulfilling the token patient role, saying token patient things, and – ultimately – doing the limited token patient things. But there is nothing token, ordinary, or suffocating about being a patient advocate within this network. This network is filled with sincerity, generosity, creativity, curiosity, and a desperate and passionate drive to improve things right this very moment for children and families living with IBD. The insatiable appetite for research, quality improvement, and innovative collaborations was infectious, and – while I can remember the extensive exhaustion after my first Learning Session – what I remember more is my heart racing with excitement realizing the remarkable gravity the network can have on pediatric IBD.

New traditions began to solidify: being asked for my opinion by established researchers and the allowance of a pause to actually absorb and respect my answer, the verbal and instrumental encouragement to actualize projects I’d dreamt of, being on a first name basis with clinicians I was so starry-eyed around that I had to force myself not to ask for autographs on manuscripts, and having an undisputedly important place at the table in the conversation for the evolution of quality, patient-centered, collaborative care. I also have to acknowledge the wealth of community-driven traditions: suitcases packed to the brim with candy, repurposing Taylor Swift’s “We’re Never Ever Getting Back Together” as an ode to my long lost colon, and corralling clinicians to take pictures with Flat Jennie.

The words “thank you” will never be enough, and I know that, and wish I could come up with some brilliantly poetic phrase to aptly articulate my profound, profound, profound gratitude. I am thankful for the collective kindness of everyone in this room, the extraordinary opportunities that have been so undeservedly yet continually offered, the patience, humility, and willingness to listen to my ideas and experiences, the faith that has been loaned to allow projects to develop, and the utterly bottomless generosity afforded to me that I have been so unimaginably honored to have received.

“Thank you” is not enough, in part because it is not, in and of itself, action. Instead, I will promise this: I promise to embody the spirit of ICN as I move throughout my psychology doctorate training, when I enter the field of pediatric psychology as a professional, and with every human being I encounter, be it in the hospital or on a street corner. I promise to play a role in the cultural revolution that is innovative collaborative care, to be proud and firm in constructing the values-informed medical traditions of tomorrow, and to help set the world on fire with the formidable (onerous) but righteous idea that clinicians, patients, and parents should stand shoulder to shoulder in medical care.

I have seen and felt the unparalleled power of this network, I have witnessed how kindness changes the world, I have been so humbled, fortified, and impassioned by sharing the vision of collaborative, personalized, and humanistic medicine with all of you. It is a cultural revolution, it is a new tradition, and it is something I am so very, very, very honored to have been a part of.

A record seven gutsy patient advocates in ICN's Patient Advisory Council - PAC, "pack" - attended the Community Conference. We tweeted live at #ICNCC15s all the way through - so please check out our feed!!

The Patient Voice is already strong on Twitter. For a week leading up to the conference, Alex, Bianca, Christian, Isabelle, Jennie, Randa, and I tweeted once a day to provide a glimpse into how IBD factors (or does not factor, in some cases) into our days. We made special reference to the key drivers of remission took center stage at the Community Conference and form the foundation of ImproveCareNow's work:





Jennie described challenges that impede her access to and communication with her doctor.

Randa described how proactive care allowed her to take better control of her ulcerative colitis.

Alex questioned why it can be so hard to find the right medication - and shared his optimism that more accurate diagnoses and research can change the game!



Bianca shared how less-than-optimal nutritional intake has impacted her - and made it difficult for her to grow at the same rate as her peers.

Isabelle emphasized the relevance of compassionate care to psychosocial health.

Finally, Christian described how a food journal has improved his ability to self-manage his IBD.

And, I shared how my pill case makes it easier for me to stay adherent at college and on-the-go!

We hope you'll join the conversation on Twitter now and in the future!

 

The IBD Learning Priorities project was designed to give young adults, parents and clinicians in the IBD community a chance to ask the questions they felt were most important in the treatment of IBD. Using an online survey, families and clinicians submitted over 200 questions - or 'learning objectives'. Common themes included diet, diagnosis and individual care needs.

These questions will help us further understand what information those who are impacted by IBD really need. We expect to find some of these questions already have answers. And where there there is good research to answer these common questions, ImproveCareNow will work to develop and share this knowledge through family-centered tools and resources. Those questions that do not have complete answers will help prioritize future pediatric IBD research.

Below are a few examples of the learning objectives received from families and clinicians like you!

• Beyond enteral therapy, what is the role of diet in the maintenance of remission in IBD?

• Is 6mp safe? Will it hurt her liver anymore than it already is?

• We need more data on dual therapy with thiopurines and methotrexate. Specifically, will patients do better if these agents are started before starting biologics rather than starting them at the same time?

Stay connected with ImproveCareNow by joining our CIRCLE so we can send you updates on the continued progress of these important community-developed learning objectives and ensure you have access to the family-centered tools and information that are developed in response to some of these questions.

Three years ago my son started on Humira in an attempt to get his Ulcerative Colitis into remission. Although it quickly became apparent that Humira was controlling his UC, my husband and I were struggling to successfully administer the drug. Our process consisted of 30 to 40 minutes of negotiation along with bribes and other unsuccessful attempts at minimizing the injection pain. We tried our best to allow our son to have some control over the situation by waiting for him to tell us when he was ready.  In the end, we were just getting frustrated.  That is when we found Buzzy.

[Editor's note: This update was shared by engagement team member Elizabeth Monti Sullivan]

Having the opportunity to represent ImproveCareNow at the recent Cincinnati Children’s Hospital Medical Center IBD Education Day gave me a firsthand view of the challenges and opportunities associated with communicating about our Network. While my ImproveCareNow Engagement and Leadership campaign team partners and I had a plan for our time at the information fair, we learned that you can never come too prepared to tell the story of this dynamic community!

We learned that building awareness and pitching involvement in ImproveCareNow to potential partners can be challenging at first, even for those of us who know a lot about the Network. And if we struggle with telling the ICN story, it must be even more challenging for our colleagues in the Network's 70+ care centers. How well can they explain ICN and its objectives? Are we sending a clear and consistent message? And why can it be so tricky to give a clear picture of ICN?

We know that ImproveCareNow is an intricate web of people, activities, and platforms. We are staff & leaders, volunteers, families, patients, sponsors, partners, clinicians, and researchers. We are many people working on many projects. You might find us talking about social media platforms and forums, quality improvement, awareness campaigns, research studies, work groups, goals and metrics, and many other things. With all of this constant activity taking place, how can we be sure we are effectively articulating who we are in ways that resonate with all of our partners?

Here is where I like to start: What we know is that ImproveCareNow centers have together increased the remission rate for registered kids with IBD from 55% to nearly 80% without using new medications. Their success is rooted in the application of quality improvement methodologies, seamless sharing of lessons learned, and a relentless focus on data that tell the story of the patients’ disease course. We know that we want to elevate and even more closely incorporate patient and family voices into the process of improving care. We are bringing together many people who focus on many different things, but all our activities share one common goal: we want to continue to be the cure for waiting for the cure. We want to outsmart IBD together!

We have heard the voices of parents and patients who see the value of collaborative improvement and are pushing us further, faster as we pursue this goal together.

Tell us what ICN means to you and how you want to be involved.

ICN Engagement Campaign

Recently, ImproveCareNow has been training participating care centers to develop and empower leaders at the center level. With this training, ImproveCareNow will have an opportunity to deepen its impact and extend its reach by focusing on equipping the whole community with the skills, knowledge and tools they need to take ownership of ImproveCareNow’s work at the local level. We are happy to announce that the first round of centers have almost completed a five-module training series and that we are about to begin rolling out training to the next group of centers!

My name is Christian Hanson and I am a sophomore at Brown University. I was diagnosed with Crohn’s disease at age ten and receive Remicade infusions at Boys Town Medical Center in Omaha, Nebraska. While Crohn’s so often feels like a heavy burden, there have been fleeting moments where my condition feels more like a blessing: Through this disease I have discovered a network of heroes who have overcome the trials of IBD and have been surrounded by a caring and compassionate network that spans the United States. I am joining the Patient Advocacy Council because I believe in their mission to magnify the voices of patients and advocate for those who cannot. I will be helping share, via CIRCLE eNewsletter, updates about the PAC and various projects related to patient engagement active throughout the ImproveCareNow Network. Feel free to contact me at [email protected] if you would like to learn more about the PAC or would like to speak with me regarding my personal experiences.

All the best,
Christian Hanson

The team at Smart Patients has impressed us here at ImproveCareNow. They have proven themselves as experts in creating a culture and a space for generous, information-rich sharing which gives people living with chronic illnesses like Crohn's disease and ulcerative colitis (Inflammatory Bowel Disease or IBD) a safe place to learn and share.

There are many social networks and online communities for IBD, but we have chosen to partner with the Smart Patients team because their custom-built, disease-specific forums offer a truly safe, warm and engaging experience for users. Smart Patients also offers conversation tagging, and clearly defined community norms, which means community members are highly likely to find the answers they need and highly unlikely to be trolled. And because the conversations are arranged using tags and completely searchable, you can always find what you’re looking for.

The Smart Patients team and ImproveCareNow have partnered to create an online IBD community that is supportive and also powerful. The Smart Patients IBD community has the power to improve health and health care systems through patient and family peer-to-peer learning.

Join the Smart Patients community for IBD today. Together, we can outsmart IBD!

[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]

Using 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 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 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.