I see the sign for “White Sands National Monument” from the passenger seat of the car. These milky white dunes are surrounded by government land used for missile tests and military operations, while the Parks Service protects a small patch in the middle. Entrance is free with our Annual Pass, and we cruise down the road of packed sand towards the far edge of the park. We see families sledding down the hills of sand on circular disks and couples eating sandwiches at park benches. We stop at the visitor center and buy a backcountry camping pass for one night.

This experience was shared during an ImproveCareNow webinar by Cindy Gessouroun. I enjoyed her story so much, I asked her to share it here on LOOP. It's a simple, yet powerful example of how much we can accomplish together when we involve every person across the spectrum of care. I hope Cindy and Kim's story will be an inspiration, and that others will share their lessons about how best to identify and build relationships with patient and parent improvement partners!

The IBD team at Oklahoma University GI clinic was trying to identify parents to join our team. We asked providers for suggestions. We invited a few parents. We had an education day hoping to identify “interested’ parents at that event…however we continued to be without a parent partner. Kim, our front desk receptionist, attended her first Community Conference (CC) in Spring 2015. At our QI TEAM meeting after the CC she said, “I can find you parents!” She identified and invited 3 parents with whom she had formed a relationship throughout the years and who stood out to her as “potential involved partners”. After her phone calls she notified the research coordinator that ALL 3 parents said YES and showed up at the next meeting. Since then, they have stayed engaged and are slowly becoming partners with our TEAM. She had wonderful insight and her personal invitation must have been a good one!

I had always been a sick child. I can remember constantly calling my parents from the nurse’s office. While sitting in the nurse’s office I found myself wondering what was wrong with me, and why everyone in the school office knew me by my first name. I was that kid.

Outgoing Patient Advisory Council (PAC) Co-Chairs - Jennie David and Sami Kennedy, who co-wrote "What We Wish Our Parents Knew" - have announced their successors! Alex Jofriet, who is committed to turning his Crohn's diagnosis into a light for others to follow and Bianca Siedlaczek, who is excited to continue her patient advocacy career with ImproveCareNow. Keep reading for personal introductions from the new PAC co-chairs!

Meet Alex Jofriet!

Hi, my name is Alex. I was diagnosed with Crohn’s Disease at age nine. It took many years, about eight after diagnosis, for me to find remission. At diagnosis, I was one of those shy, studious kids who sat in the classroom, mostly invisible to my peers and I liked that. My diagnosis of Crohn’s Disease threatened that invisibility and it took me about five years to accept my disease and open up about what I was going through.

Now, looking back, that seems like long forgotten history as I have gone from wanting to be invisible to being involved in many advocacy endeavors. My involvement in advocacy led me to ImproveCareNow (ICN), which I have been involved in for the past 4 years. What has kept me involved with ICN is their focus on the whole IBD patient. As co-chair, I hope to add to this "whole patient" focus by increasing the amount of peer support for patients in the network through a universal mentoring system. I am appreciative of all ICN has done and continues to do and am super excited to get started!

Meet Bianca Siedlaczek!

Hi, my name is Bianca! I was diagnosed with Crohn's Disease about 7 years ago, when I was 9 years old. In the past 7 years, I have been through many hospitalizations, many flares, one surgery, one year of remission, and much more. Every one of my experiences with Crohn’s Disease, through the years, has facilitated the growth of my passion for being a patient advocate. Over the past year and a half, ImproveCareNow has given me the chance to fulfill my passion for being an advocate. From the beginning, when I came to my first Learning Session with my center in Michigan, I  loved what ICN was doing to improve patient care and how the network went about doing so.

I look forward to transitioning from being a patient scholar to becoming one of the Patient Advisory Council’s Co-chairs. I am beyond excited to take this next step in my “advocacy career.” I cannot wait to continue working alongside the many centers involved with ICN and ICN’s staff. To say the least I am very excited to get started!

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The Patient Advisory Council (PAC) brings together patient advocates in ImproveCareNow as partners to create a network for pediatric IBD patient engagement. They create, co-create, and advise the creation of innovations to facilitate improvement in pediatric IBD care and quality of life for children and young adults living with IBD. The PAC welcomes passionate young adult patients (14 years and older) to join. To learn more or join please email [email protected]

Did you catch the article in HuffPost Health News about a large-scale comparison between the efficacy of Mindfulness Based Cognitive Therapy (MBCT) and anti-depressants?

This area, MBCT, is a growing interest of mine and I’m hoping to attend some trainings on it. I have informal training on mindfulness and use it myself, to great benefit! Here’s what I would say to someone else…

I am writing this having just returned from several whirlwind days in Chicago at the first ever ImproveCareNow Community Conference. The ImproveCareNow Network has come together in person twice a year for seven years, but this was the first time this gathering was not called a Learning Session—the traditional Quality Improvement Collaborative term for in-person meetings. We changed the name for several reasons, the most important being that ImproveCareNow is now indeed a community. Here are some reasons why:

We have each of these things in ImproveCareNow and in future LOOP posts I will share examples of each. But one that I didn’t list,which became very clear to me at the conference, is that the best communities take risks together. I want to share a bit more about that here.

One of our conference goals was to brainstorm new interventions—in QI-speak, “changes to test,” - that will help us get even more kids with Crohn's disease and ulcerative colitis into remission. Prior to the conference, we developed a new list of key drivers—or focus areas—that we thought were most important to improvement. Now it was time to crowd-source the best ideas for interventions to tackle in each area. This tends to be the most fun part of the process!The ImproveCareNow Network has developed interventions together before. But this time, we wanted to make sure our incredible diversity and stakeholder engagement was really reflected in these new interventions. In the weeks leading up to the conference, each center interviewed patients and parents to get input on challenges and opportunities in each Key Driver area. In doing so, they opened themselves up to a variety of feedback; I know this felt risky to some centers.

But as a community we took the risk together. Prior to the conference, nearly all of our 254 participants chose the three Key Drivers that most interested them. Once we received their choices, we put together small groups (6-9 people) that were as diverse as possible-blending people from different centers and with most groups including at least one patient, one parent, and others from several clinical roles. Planning this felt risky even as it felt like the right thing to do. Would people want to spend almost two hours of valuable conference time in an informal exercise with people outside of their peer groups? Would lone parents and patient at the tables feel overwhelmed, ignored, or vulnerable? Would conversations stall with the minutes ticking by slowly?

It ended up being a risk well worth taking. Between 2:00 pm and 4:30 pm on Saturday the low, quiet, steady buzz of conversation eased all of my concerns about people diving in and learning with those very different from themselves. Many observers noted that as  groups tackled the provided questions, the first thing they did was turn to the parent or patient at the table—deferring to their expertise. When each of the three 40-minute discussion periods ended, we worked harder than expected to get each group to wrap up and move to their next tables. And the notes that were shared—and will guide our work in the months and years ahead—are full of some of the richest, most diverse insights I’ve seen in my quality improvement career.

We work hard to make sure all participants in this community have the quality improvement structure, skills, and tools to achieve their goals. Even more important is making sure the right centers and people connect so they can do more together than alone. We foster this online on our ICN Exchange knowledge commons, on monthly webinars, and at our Community Conferences. Admittedly, this gets a bit more challenging as we grow and we don’t always get it right. But what these collaboration sessions showed me is that community members desperately want to keep connecting across roles and centers and that they embrace the expertise of everyone at the table. They are building their own momentum and will continue to do so even as we get bigger and push our network infrastructure to keep up. So thank you to the ImproveCareNow community for taking risks together, leaving roles and titles aside, and creating a better today and tomorrow for and with kids with IBD.

Samantha Kennedy - outgoing Patient Advisory Council ("Pack") Co-Chair - is heading off to medical school in the Fall. In an inspirational message to Community Conference attendees - and indeed the whole ImproveCareNow Community - she thanks everyone for working within ImproveCareNow and for believing we can make a difference together. And she reminds us that our work (with patients specifically, and in general) may not be easy or quick or tidy, but 'it is the future, and we need to be the same sort of brave you ask patients to be as we pave that road.'

Sami's words are inspiration on-tap. Enjoy!

This is not a goodbye.

Yes, I will be a student at Cooper Medical School in the fall. Yes, Jennie and I are transitioning the Patient Advisory Council into the hands of wiser, brighter, and as it so happens, younger colleagues. Yet, this is not a goodbye. I have little doubt you will agree: once you are a part of ImproveCareNow, you are always part of ImproveCareNow. As I enter medical school, I question how I can best serve as both a patient advocate and a medical student. I know only this for certain: I cannot imagine practicing in a system without ImproveCareNow and similar networks I hope will be just as successful for other conditions. We are not only creating health for kids with inflammatory bowel diseases; this is making the whole system healthier.

By name, we are a curriculum. We are a learning health network, a network – learning – together. I think it is easy to forget what that means - that we’re all students. If I have been brought up through the education system correctly, as I hope I have as a soon-to-be-graduating senior, being a student is not about getting everything right every time. Students try. Students revise. Students experience. Students have open and engaged minds that recognize success not as a thing but as a method. We are students. We are a learning health network.

When I first started co-chairing the PAC, I really strongly believed we needed to build a model framework for the engagement of patients in a learning health network. Jennie and I took the PAC and restructured it into task forces. We are distributing leadership. We are increasing intra-PAC participation. We are concentrating our resources on developing sustainable task forces, on developing leaders. We are increasing our collaboration with your care centers throughout the network, finding ways we can help each other. We are trying to foster and amplify the voices of not only PAC members, but patients throughout the network. We are establishing a project management structure. We are clarifying guidelines for what active membership means. We are piloting a recruitment program. We are PDSA-ing what ideal patient engagement here at Community Conferences should resemble.

I do not like how those sentences begin. “We are” as a phrase signifies something that is ongoing, not something that is done. As students, researchers, and leaders, we like progress and conclusions. It can feel to me that some of the work we are engaging in is continuing indefinitely.

In our case, however, “we are” is a phrase of success. We are lasting. We are continuing. We are making changes, which lead to other changes, hence prompting more changes.
We are changing the paradigm. In 2013, the Patient Advisory Council was a Facebook group. Today, we are present on multiple network-wide communication platforms and building a presence within care centers. In 2013, we were trying to fit into interventions, to carve out corners and spaces and places we could fit. Today, we are co-creating our own innovations; you are allowing us to co-create yours because you see the value in that. We are challenging the paradigm of how patients and clinicians should interact. In 2013, patients and parents were a minority here. Today, we are here in force. We are fifteen patients. Fifty percent of the PAC is here this weekend. That has never happened before. In 2013, we were acquaintances, colleagues. Today, I call many of you friends and mentors - we talk about mentoring so often here just in the peer-to-peer patient sense, and that is a huge deal, but we are a community of mentors. I don’t know if we recognize that explicitly enough. We are learning in a network, we are learning not only from each other but with each other.

Very rarely will our work end with a hard stop, but that would be the wrong measure by which to judge ourselves and our success. A hard stop would only indicate failure, that we have stopped approaching barriers creatively and stopped challenging ourselves, so that we can go no further. To be a learning health network, I believe we are held to the same standards as all ideal students. We try and we do not give up, even when we want to, even when our work feels tedious, even when we feel as if we are is not enough, even when we feel as if we are achieving little. If we measure ourselves by growth and not an endpoint, we see ourselves as a community in a clearer light.

We are ImproveCareNow. I am ImproveCareNow, and I am really enthusiastically proud of that. I cannot wait to carry that to Cooper with me and beyond and see where it takes all of us. Thank you for working within ImproveCareNow, and for believing that we make a difference together. Please go home and believe in your own patients and believe they can help you go further. It may not be easy or quick or tidy - like some of us really like - but it is the future, and we need to be the same sort of brave you ask patients to be as we pave that road.

If we stop believing patients and families matter in care, our magic as a collaborative will be lost. We celebrate our successes not because failures do not happen, but because when we keep trying and trying and trying, we succeed. It may feel like magic, but it is we are just people – believing –together.

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

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

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

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

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

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

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

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

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

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

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

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





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

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

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



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

Isabelle emphasized the relevance of compassionate care to psychosocial health.

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

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

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

 

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

All the best,
Christian Hanson