LOOP Blog

 “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.

I tell my Kindergartners to make choices that are kind.  Isn't that the Kindergarten explanation for how Crohn's disease works; it causes your body to make the unkind choice to attack itself. Ever since I was 13 part of my daily life is deciding how to manage having Crohn's disease.  I am free to make choices that heal or choices that destroy.

Being a part of the Patient Advisory Council, Take Steps, and CCFA encourages me to make decisions that bring wellness to myself and others.

A must-read reblog from The Lybbaverse - about getting #healthier2gether.

There are many reasons why ImproveCareNow (and collaborative healthcare networks like it) is a good thing.  The website at healthiertogether.org is a venue for everyone who believes healthcare is better when patients, families, and care teams are able to work together, learn from each other and share insights.  It is a place to share reasons and what matters, or to simply say "I Support ImproveCareNow" or "I Support Getting Healthier Together".

Please help us reach our goal of 1,000 people showing their support by September 15th.  Each one of us can make a difference.  Together we can make change.  Please share your voice - today.

How can you share your voice and help?  Visit healthiertogether.org today and show your support.  Support comes in many forms - a note or a novella, a photo or a poem, a story or a song. Share widely. 

Thank you.

Not sure what ImproveCareNow is?  Read the Purpose Statement.

If ERs gave out awards to their most loyal customers, I’d be a no-brainer for the #1 Customer award. But, since I live in reality, I collect medical bracelets in lieu of my big award.

Ending up in the ER on a Wednesday around midnight was an unexpected way to spend the night. When my Dad and I started walking toward the way-too-familiar ER entrance, I turned to him and said, “This is how I spend a night out on the town.”

Jennie: 0, Body: 1

Ironically, my ER-dash had nothing to do with my Crohn’s, but rather a separate condition that leaves me prone to blood clots. I’d developed some chest pain earlier in the evening and given my odd combination of past history with clots and the fact that I'm now working in cardiac surgery (and being all too conscious of heart problems), my parents and I figured safe was better than sorry, even if it did mean adding another metaphorical stamp to my ER frequent flyer card.

FYI: Chest pain is like the golden ticket in the ER – you whiz right in and before you know it you’re strapped to an EKG and instructed to stay still (warning: not an encouragement to report chest pain to triage unless you have it!). For an ER that I’ve spent way too much time in, this was by far the quickest trip to a room yet, and as I was being taken to the room, I noticed a sign that bugs me every time.

STAFF ONLY

Capital letters, bolded, just in case you couldn’t read it on the first go-round. I remember the first time I saw such a sign, in my elementary school, walking by the staff room and feeling indignant. Staff only? I thought to my self. If staff are people who work somewhere, then I’m staff too because I work at school. Why are students not considered staff? Yes, I’ll admit that staff has a more nuanced meaning than simply ‘working’ at a place, but even so it bothered me then and it bothers me now. Especially given that I actually am a hospital employee now, albeit not in the ER, do I dare cross the threshold of the STAFF ONLY areas?

Spoiler alert: I did not stomp through the STAFF ONLY hallways proclaiming that I too was staff, but I did something better. The ER resident assigned to my case was a young, dry-humored doctor who seemed patient and kind even if it was the wee hours of the morning. When he asked for my past medical history, I squinted at him and told him I wasn’t really sure where to begin. I began listing my medical conditions and issues as he busily scribbled it all down, asking some questions and prompting me to recall other relevant medical history. Every addition to the list made him raise his eyebrows and I couldn’t help but laugh as I continued to rattle off problems – truly, it would have been kind of funny if it wasn’t so ridiculous. I intentionally used all of my medical jargon to show him that I knew what I was talking about. He smirked at me and said, “When are you going to med school?”

At one point, he looked up from his paper and said, “You know, I thought I’d come into the room and meet this 21 year old girl with multiple problems and risk factors and she’d be all whatever, but instead I come in here and you’re all bright and happy, I’m just like, I don’t know.”

“Well,” I told him. “You know the body, even when it’s crappy, is incredibly resilient and you can still do everything and do what you want.” I proceeded to tell him about graduating on time from college with double honors, and he held up his hand for a high-five. It’s official folks: high-fiving a doctor has been crossed off my bucket list. And to be clear, it is not that I think I’m extraordinary, but I do think I am normal and I think that is exactly what struck him.

I hope that he remembers me - and the notion that living with a chronic illness is still living - years from now when he’s a little older, a little greyer, and has his own patients without an attending around to keep tabs on him. I hope I taught him something that he couldn’t learn in a textbook. I hope I earned my honorary medical degree by showing him that doctors can and need to learn from patients just as much as they need to work with patients. There may be hallways marked off with STAFF ONLY, but that at the end of the day, it’s not about labels or the costumes of lab coats or Johnny shirts, but rather about the collaborative relationship, the give and take, the listening and the caring between doctors and patients.

Because we’ll get a lot farther if we work together versus working alone.

Jennie