LOOP Blog

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

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

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

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

Snowflakes and ImproveCareNow

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

“Hard ask?” – that sounds hard!

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

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

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

What this means to patients and families.

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

Meanwhile, we still have a lot to learn.

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

When Jennie and I applied to represent the Patient Advisory Council for ImproveCareNow as PAC Scholars in 2012, we were asked to each write an essay on our expectations and goals. I read mine over in December before I jumped on a plane to Orlando - more on that later.

I wrote in my essay, way back in 2012, a list of promises I would keep if I could just please go to a Learning Session. Paramount on that list was this: "I will listen more than I will speak." Because that's what patients do, right? I had the distinct feeling that I would be an intruder in a place where patients don't belong - and let me be clear that no one in ImproveCareNow made me feel this way; my stereotyped idea of what it meant to be a patient did.

"I will listen more than I will speak." This was my perception: it was okay for patients to sit at the table. To sit, to listen, but to speak? How could I? I was nineteen. I was a patient. What could I possibly have to share?

There is a time for listening, absolutely. But there is also a time for speaking - for all to speak. I had no concept of that as a young patient. I couldn't imagine myself having any sort of expertise that would help improve the healthcare system, even as I navigated it constantly. I figured I'd be there as an observer, to bring back insights to share with other patients about ImproveCareNow's work to help kids recover from, and more so, avoid flares of their IBD. Observer is the word I would have chosen to describe my responsibilities there.

PAC Co-Chairs, then PAC Scholars, Jennie David (left) and Sami Kennedy (right) at their first ImproveCareNow Learning Session, October 2012.

Since my first Learning Session in the fall of 2012, I have been to five more. At each of them I have listened with a tape recorder running in my mind every second of every day, but I have also come home with a hoarse voice. Observer? No. I am so much more. No one at the Learning Session is just an observer - whether a long-time veteran or a special guest. Look at the buzz generated on Twitter (while you're at it, check out #icncc15s!) if you don't believe me.

I love to tell the story from my second Learning Session. To give you some context I am still nineteen here, and I've never before presented anything, anywhere, outside of a classroom. I was involved in a Q&A after a presentation I co-led with a physician and psychologist on medication adherence. A psychologist, physician, and patient together giving a presentation - I couldn't have imagined that just six months earlier! A physician in the audience posed a question to me regarding how I felt adherence could be effectively encouraged in patients my age. I gave my best answer, and he responded with his opinion based on his experiences, which happened not to be congruent with mine. We conversed for a few minutes; others chimed in. It was fascinating, thrilling, magical; I don't know if I can point to a better real-life definition of active collaboration.

After the session, this same physician hurried up to me at the podium. "I'm sorry," he said.

Wait, he said what?!

"I'm sorry," he said.

I asked him to clarify, very confused, and he explained that he worried he had made me uncomfortable by challenging my opinion as a patient. In fact, he had done just the opposite. This was my ImproveCareNow "lightbulb" moment.

Sami (left) with former PAC Chair Jill (right) and ImproveCareNow project coordinator Molly (center) at the Spring 2013 Learning Session.

I have been asked countless times: how did you become who you are, a young patient leader? How do we get our patients to be like you? I am not sure this is the question we should be asking - because it assumes I am extraordinary. I know I am different; I have done things few other patients my age have - but it is not me that is extraordinary. I have been welcomed into an environment where I am encouraged to not only sit at the table, but also to stand up and address the whole room.

ImproveCareNow is an extraordinary community - a community with an ever-growing number of parents and patients being handed the mic - being asked to do things that were never before possible. This physician hadn't made me uncomfortable, no, not at all - he had made me comfortable. Our conversation erased all doubt from my mind that I was there for show; I was there for the same reason as him.

I wish I could convey to you how incredible that felt - and how sad I feel in retrospect that feeling included, truly included, had to feel incredible because it was so unusual.

I told that very story twice in 2014 to two very amazing audiences - first, to executives from the Robert Wood Johnson Foundation and, second, to healthcare leaders and learners at the Institute for Healthcare Improvement National Forum - the reason I took that flight to Orlando. I presented the Patient Advisory Council to each and, in each case, asked them to imagine collaborating with patients. I told them about the promise I made before my very first Learning Session, and how I have broken it over and over again.

Sami presenting the PAC at the Institute for Healthcare Improvement National Forum in December 2014.

There is a time for listening, and there is a time for speaking. For all to speak, and all to listen.

I found out in the fall I've been accepted to medical school, and I'm still trying to figure out what it will mean for me to be both a patient advocate and a medical student. But here is what I do know: I can't really imagine myself practicing in a system without ImproveCareNow and networks like it that I hope will be just as successful for other conditions. I want to be a physician who makes my younger self proud. One who doesn't just repair broken things, but creates things that are better. One who is brave enough to say and show that everyone has expertise, taking patient and family engagement to the places ImproveCareNow has, where it can be frightening to go. I see networks following in the footsteps of ImproveCareNow as the foundation of how I hope to practice - and how I have to practice. This is not only creating health for kids with IBD; this is making the whole system healthier.

Of course I am scared as I figure out a new set of expectations - but, this time, I don't expect to be silent.

https://twitter.com/Sarituno/status/560137404838051840

The goal of medical research is to find answers that will improve the lives of patients. But how can we be sure the answers really matter if we don’t ask patients what they want and need to know?

ImproveCareNow is committed to supporting research that represents patient and family perspectives. As part of our funding from the Patient Centered Outcomes Research Institute and the US Agency for Healthcare Research and Quality, we are working with leading health care researchers from Children's Hospital of Philadelphia, Katherine Bevans, PhD and Chris Forrest, MD, PhD (selected publications by Dr. Forrest) to use new ways to engage everyone in the IBD community in setting our direction for learning. They have created a website called Patient Priorities to find out what YOU want and need to know about Crohn’s disease and ulcerative colitis (IBD). You don’t need any research experience to participate.

You will be asked to recall moments during your/your child’s diagnosis and/or treatment when you wanted more information, or had questions that were not answered. Maybe you had questions when comparing two treatment options, or making the decision to end a particular treatment. Any difficult moment when you needed more clarity and information is important for researchers to know about.

Responses to the 10-minute survey are anonymous and will be grouped with many other responses to develop a list of “Learning Objectives.”  Some Learning Objectives may be answered using existing research. Where there is good research to answer common questions, ImproveCareNow will be making more tools and resources for families available through care centers and in our online communities: Facebook, Twitter, here on LOOP, CIRCLE, the ICN Exchange and Smart Patients. Those Learning Objectives that are unanswered and require more research will be added to the ImproveCareNow research agenda.

We’ve heard from many patients with IBD and their parents. It would be great to hear from many more to be sure the Learning Objectives really represent a wide variety of experiences.

Here’s your survey: http://bit.ly/lrnobjs

This is an important opportunity for us to shape the future of IBD research. We will be sharing our results and what we’ve learned along the way, so you can see how we’re outsmarting IBD together.

A few months back I wrote about the importance of stories as we work together to improve care for  kids with Crohn’s disease and ulcerative colitis. And what a wonderful collection of stories we are building! But we also know that data and measurable outcomes (like % of kids in remission, and % of kids NOT taking steroids) are really important too. One of the most important tools ImproveCareNow (ICN) teams use is called 90-day goals.

90-day goals are meant to ground and shape teams’ quality improvement (QI) work. Teams use QI to see where the gaps are in the care they deliver to each patient, and all patients, they see with IBD, and figure out the best ways to close those gaps (or make real improvements in care and outcomes). These goals also provide a rallying point for team members, keeping them aligned, focused, and motivated. Done well, 90-day goals are incredibly motivating and help the team strive to achieve big things together, while also honing in on the individual (sometimes nebulous) ideas for improvement. In QI it is always important to refine your goal or aim into something specific, measurable, (hopefully) achievable, realistic, and time-bound (SMART).

I have been reflecting on the diverse goals that ICN teams set for the last quarter of 2014. I want to share some of my favorites - and give you a little snapshot of the work that is going on across the Network. Whether new to the Network or having years of experience with collaborative quality improvement, ICN centers are working to create systems that are sustainable and manageable, to better understand the needs of individual patients and groups of patients, and of course to get more patients into remission and keep them there.

A brand new center: “We will register 70 patients total (50% of our estimated eligible population).” This reflects an important focus on the basics—getting patients into the ICN registry so they can benefit from the tools available to learn from their data and make related improvements in care.

A team that is gaining momentum after about six months of participation in ImproveCareNow: “Each faculty will review a Pre-Visit Plan on at least 25% of their IBD patients.” This center has worked hard to get patients into the ImproveCareNow registry. They are now ready to focus becoming a proactive, prepared practice team—assessing the needs of patients prior to visits. They are starting small so that they can test different changes and learn as they go…before spreading to even more patients.

A “veteran” team aiming to make sure that patients transitioning to adult care are prepared for that major milestone: “By December 31, 2014, we will achieve…20% increase in patients 16-18 years old with a transition plan.” This center knows that transition to adult care is so much more than just making a referral to an adult physician. They want to know that their patients have the knowledge, skills, and tools they need to navigate that journey.

And a team that has already achieved an impressive 80% remission rate, pushing to see how high they can go: “By December 31 2014, the remission rate will  consistently be 85% two of the three months of the quarter.” This center has built a reliable, proactive, and patient-centered system. They and others are setting a new bar for the outcomes that are possible when all members—patients, parents, clinicians, and improvers—work together!

It can be hard to explain what a complex system like ImproveCareNow is all about. There are a lot of moving parts! After all, we can all agree health care is very complex! As a leader in this network, I know we often talk about the big innovations, the patient stories, and the work we do to keep this community connected across the miles. But these individual goals give a real concrete look at part of the foundation of this network’s success. The day-to-day, on-the-ground work that goes on at 71 (and counting!) ICN care centers across the US and UK.

It’s important to point out that the goals of brand new teams, which focus on ensuring every patient with IBD is included in the ImproveCareNow registry and that data is 100% complete and accurate,  are no less important than the goals of more experienced teams. Once a solid foundation for improvement is laid, teams are able to focus on achieving even better outcomes (like higher remission rates). It is a continuum—a journey that all centers begin when they join ImproveCareNow. And as a Network that encourages “seamless sharing and shameless stealing,” none of the centers are working toward these goals alone. Experienced teams become mentors and coaches for newer teams even as they work toward their own goals.  And newer teams are able to go further, faster because we’re all in this together.

Thank you to the ImproveCareNow teams for another amazing set of goals. We can’t wait to see what you achieve together!

[Editor's note: Ask your care team about their ImproveCareNow goals next time you're in clinic.They'd be glad to share! Not sure if you're at an ICN center, find out here.]

Justin Vandergrift believes when you’re meant to do something, doors will open. But you have to be there when the doorbell rings. You have to open that door. And Justin has opened a lot of doors in his life. He runs multiple companies, volunteers at Levine Children’s Hospital, and has made it his mission to deliver hope and inspiration, information and empowerment to families (just like his) living with a chronic illness – like Crohn’s disease, which his daughter Kathryn has

Crohn’s disease, along with ulcerative colitis, is also known as Inflammatory Bowel Disease or IBD.

I asked Justin to share the story of Empowered by Kids (EBK), the non-profit he co-founded with two other parents (Tania Moon and Julia Ament-Cox), to fast-track the delivery of hope, inspiration, information and empowerment where it’s needed most.

The story begins with an ImproveCareNow (ICN) Learning Session and a greeting card.

At his first Learning Session, Justin remembers Mary Jones from Texas Children’s sharing how she designed a card and filled it with greetings from patients and hand-delivered it to kids with IBD staying on the inpatient floor. It was a huge success.

Justin loved the idea, so he partnered with an aspiring artist and pediatric IBD patient back at Levine to design a card and then filled it with greetings from patients. He printed the cards and added them to the inpatient care kits the Levine support group put together. The response was amazing!

“I remember our Social Worker telling me the cards were the very best part of the care kits!”

Building on the success of the greeting cards, Justin and the ICN Parent Working Group hatched a plan for a “Book of Hope” - a collection of stories and greetings from parents and patients with IBD, designed to deliver hope well beyond the walls of a single hospital. Enthusiasm for the project was overwhelming! But it was not clear how to pay for it and what the legal implications might be. Sensing the door closing, Justin turned toward the next.

For his birthday, he wished for nothing more than the support of family and friends, and was overwhelmed by their generosity. Recognizing this as the opportunity to bring Book of Hope to life, he teamed up with Tania Moon and Julia Ament-Cox, whom he had been working closely with on the project, and EBK was born.

In six short weeks, the trio established EBK as a 501c3 non-profit, launched a website, laid out stories from 25 parents and patients with IBD in the first edition of the Book of Hope, and printed 10,000 copies.

They arrived at the Fall 2013 Learning Session with hope in hand, and blew everyone away as they unveiled the Book of Hope and invited ICN care centers to order as many copies as they needed (free of charge) to give to all patients and families with IBD across the network. Today, Justin estimates over 60% of ICN centers have the Book of Hope in stock. And it is always available for free download online here.

The Book of Hope, like everything EBK creates and shares, is designed for parents and patients, by parents and patients. Everyone at EBK has lived through chronic illness diagnosis, and is still on the journey. Their goal is to make it just a little bit easier for those that come after them by sharing tools and information that empower patients and parents to ask good questions and make good decisions; by providing hope and inspiration as a constant reminder that no one is in this alone; and by bringing together a community of people who will continue to support, inspire, educate and empower one another.

Ding Dong…Ding Dong…

Do you hear that? It’s a doorbell ringing. Go ahead open the door. Connect with EBK. They’ve been waiting for you! Here are a few ways to connect:

• IBD Book of Hope, created by ICN Parent Working Group
  • http://www.empoweredbykids.com/books-hope/upcoming-projects/
• Cystic Fibrosis Book of Hope, created in partnership with Erin Moore
  • http://www.empoweredbykids.com/books-hope/cystic-fibrosis-book-hope/
• EBK IBD eNewsletter, written for parents, by parents
  • http://www.empoweredbykids.com/newsletters/ibd-newsletter/
• Honored Patient Stories, shared across EBK's social media channels

In case you’re wondering, Justin still listens for the doorbell. Here’s a sneak peek at some of the EBK doors that will be opening soon.

• Hope on Demand, an iOS app delivering hope to your apple device
• Hypoplastic Left Heart Syndrome Book of Hope - Winter 2014
• EBK IBD Podcasts, combining ICN center highlights, opportunities and best practices

As this year's PAC Scholars Bianca and I (Isabelle) got to go to the 2014 Fall Learning Session in Chicago. We had such a great time and just wanted to share some of our thoughts about the LS before, during and afterwards!

Before:

Isabelle: Leading up to the Learning session I was so excited! There were so many texts and e-mails and many plans to be made (plane tickets, hotel rooms, and most importantly snack choices). As it got closer I was a little nervous, as I am the only one of the PAC representatives who had never been to a Learning Session before, but mostly I was just so excited to see/meet my fellow PAC leaders and so many others!

Bianca: Before the Learning Session I was super excited to see everyone again and be able to meet my fellow PAC Scholar, Isabelle! Since I had already been to a few Learning Sessions, I knew what to expect (how busy it is, the amount of new people I would be meeting,etc.), but I was looking forward to working on a different level with the PAC. Before the Learning Session, I got to help out with the pre-work. "Grading" each center's vision for their ideal treatment center and picking my favorites was a lot of fun. I loved reading how big every center's dreams were for their own perfect IBD center.

During:

Isabelle: I met so many interesting people. It was so amazing how nice and down-to-earth everyone was, including the big-shot doctors. They all introduced themselves by their first names and seemed genuinely interested in hearing about where I go to school, what I am studying and my dreams for my future and the future of the PAC. There were many planning sessions with just the PAC and it really got me excited about our future projects and being in the Learning Session environment helped make those projects feel connected to a larger purpose.

Bianca: During the Learning Session, I met so many more people than I had anticipated! It was great to be able to formally meet everyone and see how passionate each and every center is. I also got to spend a lot of time with Isabelle, Jennie, and Sami, which was awesome to get to know them on a different level, rather than throught text/emails. The past few Learning Sessions I had been to were nice and helpful, but I like to be more involved, so this Learning Session was by far the best!

After:

Isabelle: I made so many connections and learned a lot about ICN at the Learning Session. It was a lot to take in but I really enjoyed the entire event and can’t wait to go back again, this time with even more knowledge heading into it. Meeting my fellow PAC leaders Jennie and Bianca and of course seeing Sami again was so much fun and I feel like I am so close with all of them already. I am very excited for our future and the future of ICN!

Bianca: Afterwards, I was beyond excited for what this year would bring. This LS was great becuase, like I said, I got to spend a lot of time with the PAC leadership, being introduced into the PAC leadership position, setting goals, ordering room service, and just hanging out with each other.  Though the few days were fun and enjoyable, things did get hectic at times, but overall a great, well spent, work filled weekend. I cannot wait until the next LS, because the experience of each Learning Session is like no other - the connections made, the work being done, and of course the laughs and tears shared. I am beyond excited for this year!

Speak out. Tell ImproveCareNow what IBD questions need to be answered.

What do you wish you knew about Crohn's disease or ulcerative colitis? Do you have questions about diagnosis or treatment options? What about daily management of IBD? Maybe you've wondered if a certain drug or lifestyle change would help. These are important questions! The answers could have an incredible impact on your life, the life of your child, the lives of many patients living with IBD.

ImproveCareNow is ready to answer your important questions – but we need you to tell us what they are!

Teens and young adults with IBD, and their parents and clinicians are invited to participate in the IBD Learning Priorities Project - a study being conducted in partnership with Patient Priorities. Participants will be asked to share questions and concerns about IBD, and it's treatment, management, etc. in a confidential survey. The results will be used to create a list of the top learning objectives for ImproveCareNow to focus on.

Speak out! Tell us what you need to know. Go to patientpriorities.com to complete your brief survey, now.

One of the most challenging things about my job as Communications Manager for ImproveCareNow is trying to take a Network that is as vast, as diverse, as groundbreaking as ImproveCareNow, and distill it down into a single clear message that means something...to Paul Patient, to Prudence Parent, to Carrick Clinician, to Igor Industry, to Harold Healthcare. I think about this a lot. I talk about it with my colleagues. My husband actually asked me to stop talking about it with him.

One day I found myself talking about it with one of the fabulous parent partners who volunteers her time and brilliance to help ImproveCareNow transform care, health and costs for all kids with Crohn's disease and ulcerative colitis - and she highlighted for me how I'm failing at my job. Yup. I already knew that.

But, guess what, she let me know that she's struggling too. She's tried many times to explain what ImproveCareNow is, and what we do, and each time has been met with a "huh?".  Actually, it's not the first time I've heard this story. I think many of us have tried to explain what ImproveCareNow is and been met with "huh?", because we're trying to squeeze the WHOLE story in. I get it. There is so much great work going on in ImproveCareNow; it's irresistible to try and cover it all.



But, let's go back to failure for a moment. In our network we know failure is really just opportunity in disguise. An opportunity to learn something new, to change the way we approach something, to make an improvement.

So, on that note, I've been thinking about opportunities to Improve Communications Now. And I've decided it is not my job. Wait, did I just fire myself?! No. It's not my job because, like so much of what we do in ImproveCareNow, I can't do it alone. It is going to take a village.

And and then occurred to me. The village exists! There's Steve from the Research Committee. Melida from the ICN Exchange. Sarah M. from the Quality Improvement & Executive Leadership teams. Jamie from the Parent Working group. Jennie & Sami and all the PACers from the Patient Advisory Council. There's Noel from the Psychologist/Social Worker group. Michael who is a psychologist, researcher and a parent as well. And more. And they are all here on LOOP.

Ok, so we've got the village. Where do we go from here? Well, I think we should expand the village. Bring more storytellers into mix. In fact, I think you should consider being one of those storytellers. How will you begin? A great way to start is by asking yourself "what is my ICN story?" Write it down. And send it to me.

As for me, I'll just sit back and let you do all the work. I'm just kidding! I'll be here, helping you along the way. I'll work with you as your editor, your collaborator, your writing coach. My job is to help you share what ImproveCareNow is through your story. And it's also to take your story, and the stories of many others, and showcase them together so they reveal the bigger picture. And that is how we will go from stories, to the WHOLE story. That's how we'll go full circle.

- Sarah