LOOP Blog

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!

 

The IBD Learning Priorities project was designed to give young adults, parents and clinicians in the IBD community a chance to ask the questions they felt were most important in the treatment of IBD. Using an online survey, families and clinicians submitted over 200 questions - or 'learning objectives'. Common themes included diet, diagnosis and individual care needs.

These questions will help us further understand what information those who are impacted by IBD really need. We expect to find some of these questions already have answers. And where there there is good research to answer these common questions, ImproveCareNow will work to develop and share this knowledge through family-centered tools and resources. Those questions that do not have complete answers will help prioritize future pediatric IBD research.

Below are a few examples of the learning objectives received from families and clinicians like you!

• Beyond enteral therapy, what is the role of diet in the maintenance of remission in IBD?

• Is 6mp safe? Will it hurt her liver anymore than it already is?

• We need more data on dual therapy with thiopurines and methotrexate. Specifically, will patients do better if these agents are started before starting biologics rather than starting them at the same time?

Stay connected with ImproveCareNow by joining our CIRCLE so we can send you updates on the continued progress of these important community-developed learning objectives and ensure you have access to the family-centered tools and information that are developed in response to some of these questions.

Three years ago my son started on Humira in an attempt to get his Ulcerative Colitis into remission. Although it quickly became apparent that Humira was controlling his UC, my husband and I were struggling to successfully administer the drug. Our process consisted of 30 to 40 minutes of negotiation along with bribes and other unsuccessful attempts at minimizing the injection pain. We tried our best to allow our son to have some control over the situation by waiting for him to tell us when he was ready.  In the end, we were just getting frustrated.  That is when we found Buzzy.

[Editor's note: This update was shared by engagement team member Elizabeth Monti Sullivan]

Having the opportunity to represent ImproveCareNow at the recent Cincinnati Children’s Hospital Medical Center IBD Education Day gave me a firsthand view of the challenges and opportunities associated with communicating about our Network. While my ImproveCareNow Engagement and Leadership campaign team partners and I had a plan for our time at the information fair, we learned that you can never come too prepared to tell the story of this dynamic community!

We learned that building awareness and pitching involvement in ImproveCareNow to potential partners can be challenging at first, even for those of us who know a lot about the Network. And if we struggle with telling the ICN story, it must be even more challenging for our colleagues in the Network's 70+ care centers. How well can they explain ICN and its objectives? Are we sending a clear and consistent message? And why can it be so tricky to give a clear picture of ICN?

We know that ImproveCareNow is an intricate web of people, activities, and platforms. We are staff & leaders, volunteers, families, patients, sponsors, partners, clinicians, and researchers. We are many people working on many projects. You might find us talking about social media platforms and forums, quality improvement, awareness campaigns, research studies, work groups, goals and metrics, and many other things. With all of this constant activity taking place, how can we be sure we are effectively articulating who we are in ways that resonate with all of our partners?

Here is where I like to start: What we know is that ImproveCareNow centers have together increased the remission rate for registered kids with IBD from 55% to nearly 80% without using new medications. Their success is rooted in the application of quality improvement methodologies, seamless sharing of lessons learned, and a relentless focus on data that tell the story of the patients’ disease course. We know that we want to elevate and even more closely incorporate patient and family voices into the process of improving care. We are bringing together many people who focus on many different things, but all our activities share one common goal: we want to continue to be the cure for waiting for the cure. We want to outsmart IBD together!

We have heard the voices of parents and patients who see the value of collaborative improvement and are pushing us further, faster as we pursue this goal together.

Tell us what ICN means to you and how you want to be involved.

ICN Engagement Campaign

Recently, ImproveCareNow has been training participating care centers to develop and empower leaders at the center level. With this training, ImproveCareNow will have an opportunity to deepen its impact and extend its reach by focusing on equipping the whole community with the skills, knowledge and tools they need to take ownership of ImproveCareNow’s work at the local level. We are happy to announce that the first round of centers have almost completed a five-module training series and that we are about to begin rolling out training to the next group of centers!

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

The team at Smart Patients has impressed us here at ImproveCareNow. They have proven themselves as experts in creating a culture and a space for generous, information-rich sharing which gives people living with chronic illnesses like Crohn's disease and ulcerative colitis (Inflammatory Bowel Disease or IBD) a safe place to learn and share.

There are many social networks and online communities for IBD, but we have chosen to partner with the Smart Patients team because their custom-built, disease-specific forums offer a truly safe, warm and engaging experience for users. Smart Patients also offers conversation tagging, and clearly defined community norms, which means community members are highly likely to find the answers they need and highly unlikely to be trolled. And because the conversations are arranged using tags and completely searchable, you can always find what you’re looking for.

The Smart Patients team and ImproveCareNow have partnered to create an online IBD community that is supportive and also powerful. The Smart Patients IBD community has the power to improve health and health care systems through patient and family peer-to-peer learning.

Join the Smart Patients community for IBD today. Together, we can outsmart IBD!