When I was little, I had a lilac-purple colored bicycle. There were shiny streamers at the ends of the white handlebars, which would often catch the wind as I rode through a field near our house, my parents cheering and running behind me holding tight to the lip of the seat. Having gotten used to the stable comfort of riding my tricycle around our quiet suburban cul-de-sac, I remember feeling both terrified and thrilled at the expanse of the field and my ‘big girl’ two-wheeler. Learning to ride my bike – like most things in life – was a skill that required a lot of technical and emotional support from others, and a belief that I could do it.

A few months before I graduated high school at 17, I went to the hospital with my Mom for the so-called “transition appointment.” We had been sheltered and insulated in the pediatric world, full of pastel-colored murals, teddy bears, and bandages that were cut into heart shapes. The adult medical world was cryptic and distant – a new building, new doctors, new nurses, new everything. While everyone was perfectly polite, the transition appointment consisted of being told which adult doctor I was going to see and when/where I had to show up; there were no choices, no decisions, no questions. And there was no road-map for how to get from point A (pediatric care) to point B (adult care).

There are two important concepts that often get conflated: transition is the careful, premeditated, and inclusive process of educating and empowering an individual to be responsible for one’s health, while transfer is the physical change of moving to a new medical facility (e.g., pediatric to adult hospital). Transition is the meaningful process of gaining and growing skills like medical literacy, advocacy, adherence strategies, and so on. It requires a team of people (patient, parent, pediatric and adult doctors, nurses, etc.) working together to empower the patient. It’s the difference between learning to ride that little purple bike in a big field with lots of support versus just being given the bike with no guidance about how to use it.

According to Dr. Michele Maddux, a clinical psychologist at Children’s Mercy Hospital, who helped develop their transition program, Mercy’s efforts had previously involved transferring medical records and, “finding an adult provider, with significantly less focus on equipping adolescent patients with the tools and skills needed to successfully manage their health care needs.” Seeing this gap, Dr. Maddux and a dedicated transition task-force set out to create a holistic transition program that managed the clinical issues while taking lifestyle matters and family perspectives into account. They started by interviewing each of the pediatric gastroenterologists (GIs) on service to ensure physician engagement in the project and to capture their unique perspectives. They also created a GI roundtable and invited pediatric and adult GIs to have transparent conversations about transition. This resulted in a provider database and helped to dispel some of the myths that pediatric and adult GIs had about each other. The success of the roundtable and the transition task-force’s efforts culminated in the hiring of a transition coordinator and the development of a transition readiness screener for patients as well as educational materials for patients and families undergoing transition. The educational materials were vetted by Mercy’s general parent and teen advisory boards (i.e., not IBD specific) and by parents of children living with IBD.

Cue Jamie Hicks – a perfect fit into the role given her nursing background and a busy mom of three, including 10-year-old Colson who lives with Crohn’s. Prior to reviewing the transition materials, Jamie said, “[i]t simply wasn’t on my radar… I think of him growing up and how the disease will impact his future. But I never linked that to him taking over my ‘job’ as the manager of his health care.” Jamie praised the educational materials as “fantastic”, underscoring the importance of a defined direction and plan over guessing and uncertainty. Jamie’s main contributions were adjusting the material’s language, which she believes can have a large impact on how the information is received and understood by kids and families. According to Dr. Maddux, “Jamie brought a much needed patient/family voice to our materials that gave us a unique opportunity to craft our educational materials to meet the needs of families.”

Both Dr. Maddux and Jamie reiterate the vital importance of creating space for parents in research projects. Dr. Maddux pointed to the language and format changes as key edits that would have gone unaddressed without parent and patient engagement. Jamie addressed the critical role parents play as the people who most intimately understand their children beyond the clinic by helping to appropriately tailor educational materials and provide ‘behind the scenes’ information about children's motivations and worries. Similarly, they are both passionate about transition being relationship-based and starting as early as possible so the changes in medical responsibility are empowering and fitting for each child and familial situation.

We may not have a cure for IBD, but thanks to the insight and persistence of Dr. Maddux’s team and parents like Jamie, it is possible to implement a comprehensive, team-based transition program that prepares young patients with IBD to manage their own care. We can give our patients the encouragement, support, and information they need to ‘ride their bikes’ with strength and confidence.

After dozens of tries back in that field on my purple bicycle, I finally pushed off the ground, my feet finding the pedals and my eyes trained on the horizon, newly sturdy and sure of myself, and off I went pedaling across the field as my parents clapped and whistled. It hadn’t been easy, but I did it.

And together, we can make sure all of our kids can do it too.

I’m delighted to announce that on Tuesday December 17 the Patient Centered Outcomes Research Institute (PCORI) gave two major awards that will enable us to advance our work in ImproveCareNow.

One award is for $1,000,000 over 18 months for ImproveCareNow to create a Patient Powered Research Network (PPRN) to develop tools to boost patient and family engagement and implement patient reported outcomes.  The Principal Investigators are Peter Margolis, MD, PhD and Michael Seid, PhD at Cincinnati Children’s Hospital, and Richard Colletti, MD, at the University of Vermont.

The second award is for $7,000,000 over 18 months to develop a Clinical Data Research Network (CDRN) called the National Pediatric Learning Health System, initially consisting of 8 major children’s hospitals (all participating in ImproveCareNow) plus 3 improvement networks, including ImproveCareNow.  The Principal Investigators are Christopher Forrest, MD, PhD at Children’s Hospital of Philadelphia, and Peter Margolis, MD, PhD.

These awards are the results of the outstanding work of everyone participating in the ImproveCareNow Network, and in particular those who helped to prepare the extensive proposals for these awards.

Congratulations!  This is a great opportunity for us to continue our innovation, discovery and improvement!

Richard B. Colletti, MD

Network Director, ImproveCareNow

The day to day work of changing care delivery systems - to make them more reliable and effective - is important but it's nice to learn from time to time that there's an impact at multiple levels of the health care system.

One of the major federal sponsors of health services research is the US Agency for Healthcare Research and Quality (AHRQ). Rick Kronick, PhD was recently appointed the agency's new director.  Dr. Kronick has experience as a researcher, as a leader in Massachusetts and in Washington, DC. His first day on the job was two weeks ago and he mentioned ImproveCareNow in his opening remarks to the agency.

A program officer at AHRQ emailed me to share this news. Dr. Kronick's theme was achieving an impact through health services research. She paraphrased Dr. Kronick as saying that all research is viewed with a skeptical eye in tight economic times so it is important to be able to show measurable progress towards the goal of an impact on outcomes. Dr. Kronick cited ImproveCareNow as a leading of example of the kind of research that AHRQ should be sponsoring because of the very significant impact that we have had (in part through the support of the Enhanced Registries project).

By continuing to stay focused on improving outcomes, ImproveCareNow is demonstrating that when we work together the health care system can change. Achieving an impact at a larger level isn't the reason why we're doing this. At the same time, it's important for policy makers and others to know that there's hope for accelerating improvement and to know about models like ours that work. Hopefully, this will make those who support our work, more inclined to continue to do so.

George Dellal | Program Manager

As the ImproveCareNow program manager, my role is to coordinate and align all the people who tirelessly work to make ImproveCareNow the leading learning health system in the world.

I stumbled across ImproveCareNow in 2009, when I was looking for an opportunity to use my project management and process improvement background to help improve the healthcare system.  I quickly became hooked. I’m writing this post to express some of what inspires me about our work and makes me so proud to be a part of ImproveCareNow.

Sharing:

John Wilbanks once said to me “people want to share, the problem is that our systems are set up to restrict and disincentive sharing”. To give an example, two clinicians from different ImproveCareNow centers wanted to collaborate on a handbook to help kids better manage their IBD. However, before they could share their drafts with each other, lawyers from their respective hospitals spent several months going back and forth on copyright and branding issues. This is a classic example of what we call a ‘transactional cost’. These costs make sharing almost ‘not worth it’ and prevent the kind of collaboration that is necessary to change healthcare.

One of the ImproveCareNow Network’s aims is to reduce and eliminate transactional costs by designing systems that reward sharing and more importantly make it easy and convenient. A great example is the ImproveCareNow Exchange (picture Pinterest for healthcare). This internal collaboration platform has been developed by a team of volunteers to make it easy for patients, parents, clinicians and researchers to share and discuss tools and ideas to improve chronic illness care for kids with IBD.

Tools to improve healthcare are almost always ‘non-rivalrous’; meaning just because one person uses a certain tool doesn’t mean it won’t work or be helpful to someone else. Let me paraphrase Peter Gloor who described it nicely in his book “CoolFarming”: Two people walking opposite directions on a path meet and decide to give each other a dollar, as a result they each walk away with a dollar. The next day the same two people meet and this time decide to share with each other an idea they’ve had to improve healthcare, as a result they each walk away with two ideas to test.

At ImproveCareNow we have brought together hundreds of patients, parents, clinicians and researchers and enabled them to share tools and ideas. As a result they are all walking away with many more ideas and tools to transform care. This is the power of sharing.  Our collective intelligence and ability is so much greater than our individual intelligence and abilities.  It is this kind of power that is necessary to tackle the thorniest of our nation’s challenges: How do we provide our children with the care they deserve?

Technology:

I recently saw the following tweet:  “How do you know you work in healthcare? There’s still a fax machine in the office and moreover it’s used”.  It really summed up a lot of the technology challenges healthcare is facing.  We are trying to solve today’s problems and improve today’s care using outdated technology. No wonder we’re frustrated! At ImproveCareNow we’re fixing that.

ImproveCareNow has developed a data-in-once registry (called ICN2) to harness clinical data collected routinely by our clinicians at the point of care.  These data are enabling us to research which treatments work best so we can feed that information back to our centers and they can improve care for their patients.  Additionally, we’re using cell phone apps and SMS messaging to collect patient data which helps patients understand their IBD better and allows clinicians to work with them to customize care. And this is just the beginning. We’re working towards a technology infrastructure that combines clinical data and patient data; a system in which patient health can be monitored remotely and disease flare-ups predicted and prevented. That’s the promise of technology and our future healthcare system.

Learning from Variation:

Fred Trotter writes “when you’ve seen one medical practice, you’ve seen one medical practice”.  Each ImproveCareNow center operates differently; each has its own unique culture, processes and systems.  While this variation presents challenges, it also presents a huge opportunity.  Quality Improvement teaches us to embrace and learn from that variation. What does care center A do that care center B doesn’t? What impact is it having on patient outcomes?  Where is the positive deviance (better solution)? How can we spread it?  These are the questions that our team asks every day, and embedded in their answers are the reasons we have been so successful at improving clinical outcomes.

I could keep writing. But this post is long enough already.  I’ve tried to convey some of the top things that make me so excited to get to work every day. But, the thing that inspires me the most are the stories I hear from our patients and families. They really are heroes - sharing their experiences, ideas, time and energy so that together we can improve the care and outcomes for all kids with IBD.

Picture this: you’re waiting for class to begin, or an elevator to open, or for a cashier to call you to the counter. Sound familiar? Welcome to my life. With a fair amount of time spent waiting, I often (along with the vast majority of my contemporaries) pull out my smart phone and start sifting through text messages and checking (and re-checking) my email. It kills a few minutes, and before you know it, class is starting or the elevator comes or the cashier calls out, “Next in line!”

Three summers ago after I returned home energized from my freshman year of college, I began a summer job as a babysitter to three one-year-olds. I love kids and these little ones – a pair of identical twin boys and a little girl – were as precious as they come (besides nap time when the boys would cry until their faces were red). I so enjoyed watching them discover the world and interact with myself and each other. I had just started a new biologic medicine before leaving school for summer break – it was going to be ‘the one’ (sadly, ‘the one’ in the chronic illness world rarely refers to a significant other, but instead the lofty potential of a medication to bring on the sought-after remission).

Spoiler alert: it was not ‘the one’ and one evening I found myself at the mouth of a toilet throwing up. I banged on the ceramic tile floor of the upstairs bathroom to get my parents’ attention downstairs in the kitchen, and after they ran up the stairs to see what the matter was, they found me in tears pleading to them that something just wasn’t right. A scope and lots of sedation later, the answer: severe inflammation throughout my colon. There’s a lot of ways to say it, but it came down to one thing – farewell colon.

There was a park a little ways away from the kids’ house and we would often walk there to play (note: a triple stroller with three kids is super heavy!). I recall walking home from the park one day and needing to go to the bathroom, immediately.   I considered going to a random house and demanding to use the bathroom but decided against it. I made it back to the kids’ house and soon found myself housebound there with my three charges, herding them in the bathroom so I could watch them every time I needed to go (which was quite often). Between bathroom breaks I can remember standing in the kitchen with an Oreo on my tongue, trying to find the energy to play with the kids.

The question soon became how did I get so sick so quickly? The answer was complicated – first and foremost, I had never really been well. Secondly, and perhaps more importantly, I had become so accustomed to feeling ill and dealing with symptoms that the feelings of wellness, health, and energy were merely distant memories. I could talk about them, but could not really physiologically remember what it was like to be well. Going to the bathroom existed solely as a horrifying painful experience, but it was my daily reality. And somewhere along the way, my disease had made the transition from uncomfortable and unpleasant to unbearable and unrealistic.

Having Crohn’s isn’t my fault – but it is my responsibility to do my best to take care of myself. After some initial denial, I was a conscientious patient who asked a lot of questions and adhered to my medications and spoke honestly with my doctors.  But I said farewell to my colon anyway.  What had I done wrong? How could I have better predicted the steep descent of the flare that eventually took my colon? Another spoiler alert: it all ended up just fine, as I was able to squeeze in my ostomy surgery a month before my sophomore year; I returned to college that semester and I love my bag. But the whole experience made me think, there must be a better way to track my symptoms so that I can catch myself when I’m starting to slip down the mountain; so I can alert my doctors and put up the CAUTION signs and figure out a strategy to rescue me from a debilitating flare.  You know, even without a colon, I still get flares.

Now picture this: you’re waiting for class, the elevator, or the cashier. You reach for your phone, but instead of texting a friend, or checking the weather, what if you took two minutes to track your symptoms? Well, luckily for us, there’s no ‘what if’ because it is real. It being Ginger.io, a smart phone app and ICN innovation that does a few super cool things. In honor of Ginger.io, I’ve made a list.

Ginger.io is Super-Cool Because…

1) It looks cool – it’s a sleek app that’s easy to use (in research geek-speak: it has a great deal of clinical utility because it’s feasible for participants to navigate).

2) It sends you push notifications when the surveys (which take an average of 2 minutes) are ready to complete, so you’ll never miss a beat.

3) It leverages your smartphone’s location services with the idea that when you’re feeling well, you’re moving all over, and when you’re feeling icky, you’re staying in bed with some Netflix (okay, so maybe the latter is just me….). The app literally tells you how much you travel so you can have a clue as to whether or not your ‘moving and grooving’ habits have changed (but don’t worry, it doesn’t creepily stalk you!).

4) Daily surveys capture the details of whether your pain is getting worse or better, whether you’re going to the bathroom more or less – in other words, it helps you become more conscious of your disease and any changes in your symptoms (i.e., giving you and your medical team the power to stop a flare in its tracks).

5) You get your info – you have a chance to receive a monthly graphic report of your answers to bring to your next doctor’s appointment.

6) It pays! A little moula never hurt anyone! Since you’re helping with research, there’s a financial incentive for every survey completed – and no, it’s not monopoly money!

Would my disease and surgical history have been any different if Ginger.io had been around 3 years ago? Maybe. But my point isn’t about rewriting my history; it’s about my ability to get engaged by tracking my symptoms and about being involved in health care innovation research in a way that is directly beneficial to me (and hopefully many others who live with chronic illness every day). In a busy world, Ginger.io is an efficient use of my time.  I don’t mind spending a few spare minutes here and there to catch up on my health and assess how I’m doing.

Your mission, should you choose to accept it, sign up for Ginger.io.  Take a few minutes to dedicate to your health on a daily basis (and hey, it will come in handy when you’re bored and staring at your phone), it’s an app-solutely great idea!

Jennie

Learn more about C3N’s N-of-1 Study and the MyIBD Platform

We invite everyone who is interested in innovative new approaches to chronic illness care to join this free, live and interactive webcast hosted by the Collaborative Chronic Care Network (C3N) on April 5^th at 1pm ET.

Ian Eslick

Ian Eslick, of the MIT Media Lab, and Dr. Peter Margolis, Scientific Director of the ImproveCareNow Network and co-principal investigator of the C3N Project, will chat informally about the C3N's innovation, the N-of-1 Study, & technology platform. This is a great opportunity to listen and learn more about how C3N is helping clinicians and patients work together on their care.

Register here.

Dr. Richard Colletti - Network Director for ImproveCareNow - announced today that an ImproveCareNow study has been accepted for oral presentation at Digestive Diseases Week in May.  This is a highly innovative study done in collaboration with the Department of Biostatistics and Epidemiology of the University of Pennsylvania.  It is a replication of the REACH study, and the first pediatric comparative effectiveness study of anti-TNF drugs.

Congratulations to Mike Kappelman, Wallace Crandall and the research team.  And congratulations and thank you to all of the centers whose data made this study possible.  More comparative effectiveness studies are planned.

Here is the abstract:

Kappelman MD, Bailey LC, Crandall WV, Zhang P, King E, Joffe M, Colletti RB, Forrest CB and the ImproveCareNow Network

Real-World Clinical and Comparative Effectiveness of Infliximab in Pediatric Crohn’s Disease

Background and Aims: Clinical trials in pediatric Crohn’s disease (CD) are difficult to recruit for, enroll highly selected subjects, and utilize standardized protocols. Thus, efficacy data from trials may not be generalizable to clinical practice. Studies of real-world clinical effectiveness are needed to fully evaluate evolving therapeutic options. We sought to use data from a multicenter clinical registry (the ImproveCareNow Network, ICN) to evaluate the clinical and comparative effectiveness of anti-TNFα biological therapy in children with moderate to severe CD.

Methods: ICN maintains a registry of medication use and clinical and laboratory data collected during pediatric gastroenterology outpatient IBD encounters (33 centers in this analysis). We identified a cohort of new users of infliximab and adalimumab with characteristics (selection criteria) similar to subjects enrolled in the REACH clinical trial. To evaluate clinical effectiveness, Pediatric Crohn’s Disease Activity Index (PCDAI) scores and corticosteroid use were evaluated at the visit closest to 10 weeks following induction. Missing data were estimated by multiple imputation. Response (PCDAI Results: 192 biologic initiators (53% male, mean age 14.9 years, mean PCDAI 39.7) were included in the analysis.  Overall, 80% experienced response, 39% remission, and 33% steroid free status at week 10. Among those on concomitant immunomodulators, 82% experienced response and 48% experienced remission (REACH clinical trial 88% and 59% respectively). In the trial simulation, 198 biologic trials were compared with 1157 non-biologic trials. Biologics were associated with increased remission (hazard ratio 1.5, 95% CI 1.1-2.0) and steroid free remission (hazard ratio 2.0, 95% CI 1.5-2.7), with corresponding number needed to treat (NNT) of 7.8 and 5.3.

Discussion: The real-world clinical effectiveness of anti-TNFα biological therapy observed in a multi-center pediatric IBD network is similar to the efficacy estimates from the REACH clinical trial. Concomitant immunomodulator use is associated with increased effectiveness. Compared with conventional care, biological therapy is more effective at achieving remission, particularly steroid-free remission. The NNT can be used to guide clinical decision making regarding risks and benefits. These findings support the use of the ICN registry for comparative effectiveness research.

In this single patient experiment, an 11-year-old patient with Crohn’s disease (and her parents) teamed up with Shehzad Saeed, MD of Cincinnati Children’s Hospital Medical Center* to test whether a change in probiotic therapy would improve the patient’s stool urgency (sudden, irresistible need to have a bowel movement).

Last month Peter Margolis, MD, PhD - Scientific Director for the ImproveCareNow Network - was interviewed by Steve Usdin of BioCentury on the topic of Network Building.  What jumped out at me was Peter's response to the question: Can the Network that you've created also be used to help in the search for new therapies and cures?

Take a look at the video clip: BioCentury 12.30.12 | Network Building

I've worked with ImproveCareNow for over two years now and I am constantly impressed with the growing variety of positive outcomes that stem from the work being done across the Network.  Although hugely important, it's not simply about raising and sustaining remission rates for kids with Crohn's and colitis.

Today is the last day of Crohn's and Colitis Awareness Week - a week of awareness and pride. Four and a half years ago, my world was rocked by my diagnosis of ulcerative colitis. April 22, 2008. Today, though, I'd like to suggest that my story really starts nearly three years later on April 11, 2011.

Three simple little words sparked many of my closest relationships: You. Me. IBD. Jennie and I are a perfect example. Although we have since found we have much more than our diagnosis in common, our friendship began because I also have IBD and (with an embarrassing amount of enthusiasm) wanted to write for her blog. YouMeIBD is also the name of a soon-to-launch C3N innovation. Young tech-savvy IBD patients are apt to go to the Internet looking for support, but they (a) may not know a safe community in which to find it or (b) may feel too timid or cautious to 'friend' others within a support community such as a Facebook group. We all may have the same diagnosis, but we all know our diagnosis is not our identity. YouMeIBD works on the presumption that mutual interests are far better indicators of friendship potential, and thus suggests friends for a patient based on mutual likes and dislikes.

How? A game-like quiz prompts users to answer questions about their likes and dislikes. Their answers, along with other information shared with the app, matches them to other patients within their age range with similar interests. Users can also create their own questions. The theory behind all of this is that use of YouMeIBD will be associated with increased patient social network density and engagement, an increased sense of well-being among patients, and ultimately better health outcomes. Why are connections between patients important?

In April 2008, I came home from the hospital with a link for an online support community. I shrugged it off with excuses for why I was okay on my own - and I was. For nearly three years, I got along just okay on my own - but just okay isn't wonderful. I felt a hole, but I knew it wasn't because I needed help. It took me three years to realize the opportunity to be a friend is just as valuable as the opportunity to have a friend. On April 11, 2011, I came home from school, where few knew my diagnosis and even less knew my story, and for reasons I can't remember, decided I was ready to click the link. I found a community that day. My world was rocked for the second time. The day I sparked my first connection around three words: You. Me. IBD.

YouMeIBD will facilitate those connections for so many more patients. By sharing our stories and connecting with other patients, we will be not only benefiting ourselves but the community as a whole. The research behind YouMeIBD suggests that while much communication regarding chronic illness among patients tends to be negative (though absolutely understandable), positive communication fosters motivation, happiness, and confidence. The psychosomatic effect of a patient's support community, or lack thereof, is profound. YouMeIBD's mission is to enable positive and constructive relationships, the key to which is connecting patients with ties between them that go deeper than their diagnosis. Jennie and I have contributed to the development of YouMeIBD for several months, and I speak for both of us when I say we are thrilled to be nearing the launch date for an application with so much potential.

A wonderful mentor of mine, whom I met through that very first online support community, once advised me: "If it's scary, then you should run at it even harder." It's a quote I keep on my computer desktop because I believe in it so wholeheartedly. IBD is scary, but I think it's even scarier if you allow that fear to paralyze you from taking steps forward toward recovery - of the body and the spirit. It took me three years to grow the courage to share my story and find support, but I would not be here celebrating Crohn's and Colitis Awareness Week or writing this blog post if I had not run towards that fear. Be brave. Reach out. Get involved. We've shared with you many opportunities this week, and there are so many more if you open yourself up to the possibilities. On April 11, 2011, I found the confidence to reach out, and that same confidence carried me to writing for this blog. It will be scary, but do it anyway.