LOOP

After a morning GI appointment, my mom wanted to get a coffee before she took me to work. We drove to a local coffee shop and I decided to go in with her to grab a tea. We placed our orders, paid, and as we were leaving, I caught a glimpse of a customer sitting at a table and suddenly recognized him.

He was a clinician from my pediatric hospital – someone I had always thought of as particularly kindly, someone who had incredible bedside manner and a great comfort in speaking to me, and someone who I hadn’t seen since high school. Since I knew I would regret it if I didn't, I walked over and said hi. He promptly hopped up from his chair, reaching out his arms for a hug, and asked how I’d been.

It was this funny moment in which I was no longer a child or a patient but just someone else in a coffee shop - grown, with a hospital ID badge slung around my neck. He couldn’t believe how old I was – “How is it possible you’re done college?” – and grinned at me as I caught him up on my life. I had sent him pictures after I hiked Machu Picchu. He said he’d been to Peru since and thought about me, trying to notice any similarities between my pictures and the Peruvian surroundings. When I told him about graduating with double honors and wanting to pursue a PhD in clinical psychology, he looked at me, smirked, and said, “That does not surprise me one bit.”

He said he was going to a meeting with some of my other former clinicians, and asked if he could pass along the full update on me. Of course I said yes, feeling a little like a movie-star that people cared what I was up to. He will always be one of my favorite clinicians. He made me feel as a kid – and in our short coffee shop interaction – like a whole person with more to offer the world than an over-sized medical chart. I believed in myself not only because my parents were supportive, but because at my sickest I had clinicians like him who saw beyond the medicine to the person.

Monday was my first day back to work after a two-week hospital stay. I walked into my office, collected hugs from my lovely co-workers, and set about logging onto the computer and catching up on emails. The fabulous boost of seeing that clinician in the coffee shop stayed with me. At one point during the day, I saw a patient for one of our studies. He was a gentleman in his 70’s and was in the surgical clinic with his wife. Before I stepped into the room, I made sure to look through his chart and get a sense of who he was – not just what surgery he was having – so I could be engaging and receptive to him as a person and not solely as a patient. I had the loveliest conversation with him and his wife, going out of my way to be open, respectful, personable, and accessible. For example, in going over the study questionnaires, I wanted to be transparent and would turn the page around to show him and his wife what the pages looked liked, explaining what I was asking and writing down so that it didn’t seem secretive or hidden. He would laugh and noticeably relax, and as they saw me throughout the day, our relationship continued to grow so that when I see him after his surgery, I will be a familiar face.

This perhaps seems silly to write a post about. But this is what I hope you've read between the lines – the person inside the patient matters. You never know who’s sitting in front of you, because it’s never just a person of a certain age with a certain disease. Especially in pediatrics, your patients are like caterpillars waiting to become butterflies – you have future doctors and advocates and economists and dancers and athletes and poets in front of you. You have children who are blossoming into themselves, with diverse talents and abilities. As clinicians for children, you have a unique opportunity to build and strengthen relationships with them as they grow emotionally and physically. Your patients will never forget you – good or bad – but why not make the memories they carry with them about how much you supported them?

Because who knows, you just might run into them in a coffee shop one day.

Jennie

At the last ImproveCareNow learning session, a mentor gave me a piece of advice I've carried with me since: "As you go forward, no matter how much training you have or how brilliant you are, never assume you know best. Always listen."

On Saturday mornings, I work as a child life volunteer at Arkansas Children's Hospital, where I follow a variation of the same rule. I play an important role, but before I knock on each and every door, I tell myself that I come last. I am there to listen and try to make make magic happen; no matter how much experience I think I have, the kid is the expert. When I enter a room on the unit with my bag and my clipboard, I am a stranger. By time I leave, I'd like to be a friend - a goal not always attainable, but always set. I try to listen more than I talk. I pick up on the little things. Would she like glitter paint more than regular paint? Princess coloring book or puppies? Should I drop a sheet of stickers in my bag before I come back?

Saturday morning, I met Tyler (name changed) who didn't look like he was having the best day. He was eight and hanging out with his video games, but I've become pretty good at distinguishing bad day faces from good day faces - and this was a bad day. I crouched down by his bed and did a run-down of "my collection" in the playroom. With Tyler, his face lit up when I suggested paint, and so I knew what to suggest next. These are the moments where that goal of making a special connection becomes possible; with the right words and the right timing, I can make a hospital room glow. It's a kind of magic all its own, but one that anyone who works in a children's hospital should recognize.

"Hey Ty, I have an idea." He looked up. "I can bring you some paper to paint." He nodded. "But do you like to paint other things too?" He looked at me funny. "Well, sometimes, I let kids I really like paint my face." This is technically a lie - only one other kid has painted my face in the hospital (his hilarious doctor's idea actually) - but Ty didn't need to know that.

Ever seen a YouTube video where a kid is asked if they'd like to leave for Disney World in about five minutes as a total surprise? He said yes with the same enthusiasm. To be honest, I didn't expect quite such a dramatic response.

His lunch came right at that moment, so I excused myself to finish up my rounds - and encouraged him to eat up. I'd be back soon, and he had work to do then.

Thirty minutes - and several delivered board games and art supplies - later, I was back in Ty's room. "Ready, bud?"

I'm about to show you what happened next - but the best part, and what I can't adequately show you in a photo or even really describe, was how much of a kick he got out of it. He had this mischievous laugh that led one of the nurses in the hallway to peek her head in to see what was going on. When he finished his artistry, he sent me onto the catwalk - or out to the unit hallway, if you'd prefer to call it that - to show me off to the nurses. Finally, I was allowed to take a look in the mirror. (Thanks to my PAC co-chair, fellow blogger, and texting bestie Jennie David for the photo comparison!)

I asked Ty if I could hire him to do my make-up for Winter Formal, but sadly, his schedule has no openings right now.

I get to do this every week. I get so excited about it, which always leads to questions about why I volunteer with sick kids. How could I want to start my weekend in a children's hospital. Isn't it sad. Statements, not questions. I do not deny the sadness, but I have had the privilege of seeing so much happiness. I might come last, but the joy I have at the end of each shift makes me feel like I am first. My work with ImproveCareNow is remarkably similar. You know my name and you hear my stories, but I want you to know that I'm here not just for me, but for every patient - your patient. I represent, but I'm last. I know it's a sentiment that Jennie and I share, and the code by which we work.

I've stopped trying to guess what's ahead for me. My life is changing by the month these days. But I hope that, even as I grow and evolve into new roles, I'll always know how to spark the magic that can get the room to glow. I want to be brilliant as a physician, but more than that, I want "my kids" to feel brilliant.

A hugely gutsy drum roll for an exciting announcement! The Patient Advisory Council (PAC) has two new patient scholars! The Patient Scholars program was pioneered as an initiative to elevate the voices of selected members of the PAC for one full academic year.  Read more >>

We are thrilled by their outstanding applications, determined spirits, and amazing accomplishments - we cannot wait to continue to work with them to build the PAC and ImproveCareNow stronger day by day!

Without further delay, let me introduce our wonderful new Patient Scholars - Katherine & Tyler!!

Katherine: Hi everyone! My name is Katherine and I am incredibly honored and excited to have the opportunity to work with the C3N and ImproveCareNow communities as a patient scholar. I recently graduated from John Carroll University as a marketing and human resource management double major. I have a huge passion for the IBD community and extending networks of care, awareness and support in any way that I can. While I am technically not a "pediatric" patient anymore, I was diagnosed with Crohn's disease as a young teen and have had to navigate some challenging transitions in life while living with this illness. My involvement began about ten years ago around my time of diagnosis. Starting as a youth ambassador for CCFA in my hometown of Columbus, OH to becoming the Co-Chair for CCFA's National Council of College Leaders (NCCL) during college, I have truly found my passion for empowering fellow patients by sharing my own experiences and contributing to education and awareness initiatives. I hope to bring some new ideas and fresh perspective to this group and I'm excited to attend the fall learning session to not only see all of these creative minds and networks at work, but also to learn as much as I can as well as share my experiences with others.

Tyler: My name is Tyler and I’m a high school senior from Westerville, Ohio. I am very involved in my school; being a peer minister, student ambassador, and member of the ski club, math club, and Italian club. I play tennis year-round and for my school as well. I’m a little bit unique in that my family has moved around multiple times. As a result I was diagnosed at Riley Hospital for Children, was a patient at Children’s Hospital of Philadelphia (CHOP), and am currently a patient at Nationwide. I have had Crohn’s disease for 8 years now, being diagnosed when I was only nine years old. My disease has had a big impact on my life and has driven me to be active and make a difference in the IBD community. I have become very involved with ImproveCareNow (ICN), CCFA, and even started my own IBD fundraiser. The IBD community has a special place in my heart because I know firsthand the impact the disease has.   I am very passionate about making a difference and being a voice for patients. I have been a part of ICN for over 2 years now and am very excited to further my involvement as a patient scholar. It is such an honor to be a patient scholar and I am most excited to be attending the fall learning session.  I’m very excited to further my involvement this year as one of the patient scholars!

Welcome to Katherine and Tyler!!!!!!

J + S

 “Actually,” I asked. “Do you have a smaller tegaderm to put over my port?”

The nurse, who’d already begun to open the larger salty green colored package stopped, looking up at me, and asked another nurse in the room to grab a smaller dressing.

Gatorade’s slogan reads, “Is it in you?”

“Yes, I have mutant Gatorade sloshing though my organs like a snowplow clearing everything in its unfortunate path.”  As I am writing this I am caught in a “not again” moment. A “not again” moment is a repeated, tiresome, irritating event. Like when a Kindergartner smashes their second glue stick, when coffee splotches your clothes after the second changing, and when your major league team cannot secure the win after the second consecutive error.  Life also houses more serious “not again” moments. Like when children are denied love and respect again, when health fails again, and when people go hungry again. The feeling of an empty rumbling stomach, for me is like rolling my foot over a tree nut as the slow pressure begins to build and produce an uncomfortable type of pain. This is only one part, as my “not again” moment involves another procedure that prevents me from eating for a day.  My brain cannot fathom the pain of others' “not again” perpetual hunger.

I’d like to tell Gatorade that what is NOT in me right now is solid food.

Crohn's Walk 2013

I’d also like to thank ImproveCareNow for the goal of being healthier together. This movement, to me constitutes fewer “not again” moments in the journeys of many peoples' health.  Working together improves outcome and prevents ailments that cause people to find themselves facing “not again” moments.  If Gatorade were to interview athletes they would probably answer, “Yes, it is in me!" Together with ImproveCareNow we can respond in kind, with the attitude that it is in us to work together and help diminish “not again” moments.

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.

[Editor's note: This post was written by Nicole Van Borkulo, a QIC working with the ImproveCareNow Network, specifically on patient and family engagement. Nicole wanted to take this opportunity to explain, from her perspective, why collaboration in healthcare - or working together to get healthier together - is so vitally important, and to ask you to please show your support for this work via the healthiertogether campaign.]

Why is collaboration in healthcare so important? Why are all voices needed to achieve the best outcomes?

Here is what I know…

I have spent the last 10+ years working as a Quality Improvement Consultant in the healthcare system. Much of this time has been spent working directly with safety net primary care practices.  The providers and staff at these practices are hardworking, mission-driven people who are really doing their work with the intention of making things better for their patients. And yet, there have been many times and many moments when I’ve been rendered completely speechless (no easy feat) by a comment or a process that is so NOT patient-centered.  How can these bright, amazingly gifted people not see that what they are doing isn’t the best approach or process for their patients and families?

Please don't misunderstand, I am not writing this to be in any way disparaging of the work or the people. But it illustrates an important point and something I have come to realize is that we – as humans – sometimes lose site of the importance of asking others what really matters TO them when we are doing something we think matters FOR them. Case in point: when my oldest son was about to turn six (he is now 16), I planned an over-the-top car themed birthday party. He loves cars! Of course this was going to be just perfect for him.  Two days before the party, he was crying in the kitchen telling me he didn't want a car party.  He actually said, ‘…but you didn’t ask me, Momma…’ Hmmm… I was so sure that what I was doing for him was the best thing. My intentions, my efforts were good; my assumptions weren’t. I hadn’t asked the person with the biggest stake in the game what mattered to him.

Part of my time is now spent working for ImproveCareNow (ICN), an innovative network of mission-driven care centers working tirelessly to improve the care and outcomes for pediatric patients with IBD (Crohn's disease and ulcerative colitis). If you read this blog regularly, you know some of the stories and the people involved.  The physicians and care teams have shown what real improvement can look like. The remission rate (77%!) is impressive and was unprecedented prior to ICN.  But, we aren’t at 100%.  Now is the time to broaden the pool of collaborators, to include the voices of ALL stakeholders in the effort.

It is time to start asking 'what more can be done', or 'what can be done differently to increase the remission rate even more?' ICN wants the opportunity to build a truly collaborative network that includes leaders from ALL healthcare stakeholder groups at the table - patients, families, care teams, and researchers. ICN wants to be a network truly led by those with the biggest investment in the outcomes. ICN wants all children and young adults with IBD to get better, faster.

Can you help? Will you help by September 15^th?

If you haven’t already, please go to healthiertogether.org and support the campaign by sharing a story or picture or video or statement to let us know that you also believe collaboration of this kind in healthcare is so important – to you, to your family, or to others you may or may not know.

To truly improve the system of healthcare, we need to hear all voices. We need to hear from you to improve care NOW.

Throughout college, I worked in a research lab studying coping strategies of women who are HIV+, and one thing that we looked for in each participant was ‘mindfulness.’ To be mindful is just what you might think: being conscious of what’s going on, what you need, and what others need around you. Mindfulness is being in the moment, although not so much being spontaneous as being considerate to yourself and to others. If you ask me, mindfulness is one of the hardest skills to train yourself on and put into action.

Dearest 13 year old Me,

You want so badly to be brave, but you don't think you are.  Instead, you believe that crying means weakness and guard yourself from others to hide from the feelings of insecurity, embarrassment, and frustration.  Here, where you come to the point of realizing how poor and needy you are, is where you will begin the journey of believing that you are brave.

No, you won’t ever like fruit punch, Nesquick, Jello, being touched in spots that needles go, the smell of anesthesia, or the look of medical equipment.  You will have to encounter these often and will decide down deep in your soul that you will not be overcome.  You will make bracelets to raise awareness that almost all the girls in your high school will wear, and will raise 5,000 dollars for research.  You will run a half marathon. You will graduate Summa Cum Laude. You will be a teacher.  You will have overwhelming support from people you love you.

Having Crohn’s is messy, difficult, sad, angry, emotional, unjust, and terrifying.  You will feel many of these things.  It will be hard because it is these feelings that will betray you and cause the traumatic events to be seared in your memory.  I’d like you to fight to control your mind, to shut the door on unhelpful memories, and to continue to move forward.  Your feelings are valid but they are not the only truth.  They are not who you are.  Who you are is loved.

At the end of the day you will face challenges, and on top of that you will have to battle Crohn’s.  I bet you wish you could catch a break. You feel trapped inside your own body that doesn't quite work right; that may be the hardest part of all.

This is the part where you remember you are braver than you think.