ImproveCareNow Community_conference


When working for becomes working with...

Look on Twitter, Facebook, LinkedIn, and many other social media outlets over the past few weeks, and ImproveCareNow is all over the place. Many quotes about “parents as partners,” “real patient engagement,” and “amazing collaboration.” It’s fantastic to see the buzz we are generating. It’s huge, and important, and feels like it will catalyze many others who are working on similar efforts to jump in and do the same. We have a lot to teach now, even as we learn. It’s helping us achieve health outcomes we did not think possible and will probably help others do the same.

 

But what does this mean at the micro level, in the day-to-day shuffle (and sometimes tornado!) of getting the real work of running this complicated Network done? I don’t pretend not to realize that the care teams out there across in our 65 centers are doing the hard work – planning visits in advance, getting to know our new automated reporting tools, and trying to fit this all into their already complex clinic workflows. They (with the families they serve) are real heroes in this Network. But a lot of work also goes on at the ImproveCareNow leadership and staff levels to make it all possible. And I consider myself very fortunate to be in the position, as part of this team, where I get to see how many of the pieces fit together, and witness the not so subtle shift in what it means to “work for ImproveCareNow.”

 

I’m going to use our recently completed Spring Learning Session as an example. Even just one year ago, planning the Learning Session meant that the core Quality Improvement (QI) project team and I looked at Network priorities and recent lessons learned, identified who would do a good job speaking about these things, and pieced together what usually turned out to be a good agenda for a good meeting. Parents and patients were starting to attend Learning Sessions, but were on the fringes and some would tell you they spent their weekend trying to figure out where they fit in. We felt good about including them, but we didn’t feel good about not understanding quite how we all fit together.

 

What a difference a year can make! In planning for the Spring 2014 Learning Session I found myself watching as unprecedented collaborations between clinicians and parents, data managers and parents, took place across the miles. In one instance, what began as an offhand comment about the potential for a parent panel at the Learning Session, which would address how centers can better engage families in QI work, became a series of many, many emails between a clinician, several parents, and ImproveCareNow staff. Over three months we worked together to co-design the objectives and draft a call-to-action that the panel could deliver to the Network. The result was one of the highlights of this Learning Session.

 

In another instance, a parent asked for permission to use Network remission data in his presentation—the kind of data that he knew could illustrate the ImproveCareNow story best. Again, I found myself watching an amazing email discussion unfold between the parent, our ImproveCareNow data manager and the centers that agreed to have their data displayed in a novel way by a parent. This kind of conversation about data (“send me that,” “no, let’s try it this way,” “yes, that will have the most impact”) happens all the time within ImproveCareNow. But until now, had been limited to QI, data management, communications, and IT staff.

 

I used to believe ImproveCareNow staff and leadership needed to work for the clinicians, parents, patients and others that make up this Network…they were partners, but also customers and we had to make it all work well for them. I now realize it’s all about working with them so they can help us get things right. So yes, I work with the many care teams who are providing more proactive and reliable medical, nursing, nutritional, social work, and psychological support to pediatric patients with IBD. But I also work with Justin, Jamie, Sami, JenJo, Jennie, Tania, Beth, David, and many, many others who have ideas and experiences that also need to be integrated into this learning health system.

 

Today these patient and parent partners email me just as any of my other coworkers would. They email me during the work day, but also at 11:00 PM and 4:00 AM, during their time. They do so despite having busy full-time jobs inside or outside of their homes and despite the extra time they already devote to caring for children with a chronic illness. They share their ideas, ask for my input, worry about pushing us too fast (I often hear: “we’re not going to get you all fired, are we?”), worry about not pushing us fast enough, and ask how my kids are doing. I push them to post things on our internal knowledge-sharing platform, the ICN Exchange, just like I push the care centers. They are creating 90-day goals to focus and guide their work just like the care centers.  Most of all, they are helping us walk together into a new model for running this Network, understanding we won’t get it right every time, caring about the impact on others who are new to this level of partnership too, and above all, making sure we all stay connected to what this work is really about:

 

 

 


Parents as partners in care

One of the joys of working with the ImproveCareNow Network is seeing the results of co-production introduced more broadly to a learning community. At the same time, communicating what this is all about can be tricky – the idea that patients and clinicians can actually be partners (in health, care, improvement, and research) - is such a paradigm shift.  In fomenting this culture change, we have come to a deep appreciation of story-telling, art, and other creative expression as a powerful way of communicating beyond the hard data. That's why it's so breathtaking when we see this come along:


https://twitter.com/michaelseid11/status/448458248627027969

Justin, who made this video, is a parent in the ImproveCareNow network.  Collaborating with other parents and with some (minor) input from ImproveCareNow staff, he distills, in less than 90 seconds, this movement to its essence so much better than my feeble words could do.


Drum Roll Please...

In only a couple of days, there will be a flurry of texting between Sami and I, sending pictures of packing and potential Learning Session outfits back and forth. Yesterday I sent Sami a few pictures of a sample outfit, to which she instantly texted back, “I like it!! It looks professional and cute!” (Note: said outfit was, indeed, packed immediately)

 

Last night I was pouring over an email with the Learning Session agenda, clicking on the various hyperlinks for teasers about the plethora of exciting things to come. One link sent me to pictures posted on the ICN Exchange of various ImproveCareNow teams; I chuckled at the Boston Children’s Hospital team’s faces photo-shopped onto duck statues (a la Make Way for Ducklings), the Children’s Healthcare of Atlanta team’s matching t-shirts, the MassGeneral Hospital for Children team’s “We love ICN” sign (complete with a full GI tract doodle), and – finally – the ICN Exchange “Team Oscar Selfie” (a gutsier version of Ellen’s now infamous Oscar celebrity selfie).

 

Nothing like previewing pictures of the big-hearted, gutsy-humored, determined-with-all-their-might-to-change-chronic-illness-care care center teams to get me excited about the Spring Learning Session!

 

Spring 2014 ImproveCareNow Learning Session

 

Sami and I have tried (and, notably, failed) at accurately articulating the pure excitement, joy, motivation, and positive energy that’s simply contagious at the Learning Session. Here in text, it sounds cheesy and like ImproveCareNow is prodding us to write down such ooey-gooey sentiments. But, let me reassure you on behalf of Sami and myself, our ooey-gooey praise is exceedingly well-deserved and comes directly from our hearts (read: guts).

 

In addition to the undeniable culture of optimism and innovative thinking, there are always particular sessions we just cannot wait for. Following are the things we look forward to most at the Spring Learning Session:





    • PAC Reunion: The Learning Session is the one time when the PAC Leadership is able to brainstorm in-person (and also eat lots, and lots of candy!). We look forward to seeing each other face to face, and are always astonished by the amount of important work we get done in a couple of days. This Learning Session will be the first where our full PAC Leadership will be in attendance (PAC co-chairs - Jennie & Sami, and Patient Scholars - Katherine & Tyler) – we just can’t wait!!

 


    • QI Fundamentals: Sami and I stumbled upon this last year as we both arrived early, and were quickly enthralled with the phenomenal centers who are our newest family members in the network. This is a wonderful opportunity if you’re in need of some inspiration (note: by the end of the weekend, you’ll be bursting with inspiration!) or a Quality Improvement refresher, and is a fantastic way to meet upcoming superstars in the network.

 


    • Opening Reception: Here, there, and everywhere – the reception is filled with amazing people and is an awesome chance to network, socialize, and get the 411 on the network’s progress and innovations with the variety of poster presentations. Also, keep an eye out for some Patient Advisory Council members who will be reprising their roles interviewing reception attendees!

 


    • The Learning Health System Today and Tomorrow: The opening never fails to deliver in motivating every cell of every attendee, and – who are we kidding – we always love seeing Dr. Margolis and Dr. Colletti (and, if we’re lucky, they’ll coordinate their outfits!).

 


    • Lunch: Food, food, more food, and lots of networking! We always fill up with some nourishment and get the chance to meet new centers, parents, and the clinicians at various centers that we are humbled to call friends.

 


    • The Learning Health System, The Months Ahead: The closing is reliably the time when you will need a stash of tissues compliments of the remarkable speeches from parents and patients. After the excitement of the weekend and the endless research ideas and connections you’ve developed, the closing is a perfect opportunity to digest (yes, pun intended) the entire experience and head home with genuine motivation that you won’t soon forget.



We can’t wait for the collaboration, the innovation, the passion, the insight, and to continue to watch children and their families living with IBD receive better, and better holistic healthcare.

 

So pack your bags (or join us on Twitter and follow the Learning Session hashtag #ICNLS) and get excited – the Spring Learning Session is just around the corner!

 

Jennie + Sami


Why?

Why?

I ask myself this question as I cry at night.

Why is my child sick?  Why has he been diagnosed with this disease?  Why so young?

Why?   

I ask his doctor this question at his appointment.

Why does it not get better with treatment?  Why so many medicines? Why surgery?

Why?

I ask this question to God as I pray.

Why does this child suffer like this?  Why does he have this cross to carry? Why him?

Why?

No one will ever forget the day that their child was diagnosed with Crohn’s disease or Ulcerative colitis.  From that point on, everything becomes “before and after.”  When you have a sick child, all else seems to stop.  Your world, your life, your very being centers around helping him or her; all else falls to the side.  At least it did in our home when Jimmy was diagnosed.

My name is Liz.  My husband, Jason, and I have three sons.  Our youngest son, Jimmy, was diagnosed with UC in October of his kindergarten year.  We had a very rough year and a half trying to get him into remission.  Currently, he is a happy, healthy eight year old with the help of Humira.

Now our goal is to build up what was lost during those years of active disease.  We are checking off delayed milestones – riding a two wheeler, trying sports, as well as physical milestones like delayed growth and loss of those precious front teeth.  These diseases affect the whole person and the whole family in ways it is hard for those who have not lived it to comprehend.  It is our role as parents to help shift the focus off of why and onto how - how do we build up our children?

In October 2013 I attended my third ImproveCareNow Learning Session as the parent representative for Riley Hospital for Children.  It is the development of these “how’s” that inspired me to get involved with ImproveCareNow and with my care team at Riley.  Not only do we want to understand how these children get this disease and how to treat it, but I love that ImproveCareNow focuses on other how’s - like how to achieve a higher remission rate, how to increase adherence and how to transfer children successfully into adult care.

At the Fall 2013 Learning Session there were twenty parents in attendance.  As pre-work for the session, the parents were asked to answer two questions:

What is your vision of improved care?

What does pre-visit planning with your child mean for you?

Parents at the Fall 2013 ImproveCareNow Learning Session completed pre-workThe objective of asking parents to answer both these questions, and our attendance at the Learning Session, was to give perspective on the whole picture of these diseases.

[Editor’s Note: Liz D is the mom of a three boys.  Her youngest son was diagnosed with Ulcerative Colitis at age 5.  She volunteers her time as a parent representative on the Riley Hospital for Children Parent Mentor Group, where she is an advocate for all families with IBD receiving care at Riley.  A mechanical engineer by trade, Liz has “retired” and loves her role as a full time wife and mother.  This has also allowed her to pursue her love of all that is artistic and creative.  Over the past 12 years, she has taught both photography and memory preservation classes to both adults and kids.]


Who is an advocate?

In honor of IBD Awareness Week, which wrapped up on Saturday, I thought I'd come back from my blogging hiatus and talk about what it means to be an advocate.

Over Thanksgiving break, I had a revealing conversation with my mom about my life in high school with ulcerative colitis. Her memories of how I coped with UC are not always how I remember myself coping. There were things that I heard from her perspective for the first time, and some of them were hard for me to revisit. I was reminded that I was once a vulnerable high-schooler - and while this is/was true for all of us, it was nevertheless hard for me to be faced with things from my past that I had unknowingly blocked for years.  I remember how much I once idolized many of the 'popular' IBD bloggers. I didn't really begin regularly reading IBD blogs until my senior year of high school, but once I did, they had a strong influence on me. One blogger ran a few opportunities for her readers to submit to group projects, and I emailed her a submission once. I remember just glowing when she responded. Of course, I realize now that she's just a normal young woman like me with IBD, but she was a celebrity to me then. It was around this time that I first started to imagine that just maybe I would one day be like her. That I could be an advocate, too.


Why is being part of my center's QI team important to me?

For many reasons. But one that comes to mind right away is that we didn't get to opt-in to this disease. We are in - all in. Over the course of this journey, we have had to learn to navigate many paths. We've experienced phone call processes, waiting rooms, treatments, and planning around a disease that at times consumes our thoughts and actions. We didn't navigate these paths for a higher purpose or with greatness in mind. We did it because we had to. And on some many occasions, the work of navigating was hard. We found ourselves exhausted by the tasks and fearful of the next step.

 

And then suddenly, there was this opportunity. One that I could choose. One that was organized around the idea of improvement.  A place to use my insight and experiences - what had become my expertise as a parent of a chronically ill child - to add value and depth.  Because, you see, I NEEDED to have a place to use this knowledge I now have. I desperately wanted my work of navigating and fighting to matter, not just for my son...but on a larger scale.

 

The first time someone on my team asked my opinion or my thoughts...the first time I came to a Learning Session and someone asked me to weigh in on a conversation, our journey became easier...because it was needed.


The PAC wants you...to email them

Jennie David and Sami Kennedy are co-chairs of the Patient Advisory Council (PAC), having taken over for the group’s founder and former chair, Jill Plevinsky. The PAC is a group of young, passionate and motivated patients with IBD who draw from their own personal experiences with chronic illness to educate and enlighten clinicians, researchers and other collaborators on how to design health care innovations that are making it possible for patients (and families) and their care teams to communicate more meaningfully with each other, to work together to investigate lifestyle changes that might have an impact on health and to truly share in decision-making about care – with the ultimate goal of getting more kids healthier, faster (and keeping them healthier longer).

 

Sami and Jennie – affectionately known as Gutsy 1 and Gutsy 2 or Jami – are not new to us. They have been active members of the PAC since early 2012 – when, without realizing it, they ‘jumped on the fast-track to super high-level engagement’. Since joining the PAC they have been engaged with ImproveCareNow and the C3N Project – and are well-known for their stirring contributions to LOOP.  Recently their role has deepened as they have been co-developing educational content and delivering presentations at Learning Sessions (our Fall 2013 Learning Session was approved for a record 14.5 CME and 15 CNE credits for eligible participants), participating on innovation teams and engaging with centers 1:1 to encourage patient involvement network-wide. They do all this on top of already full schedules – because they know, first hand, how transformative this work is.

 

It is transformative not only for ImproveCareNow and the C3N Project – which are collaborating to change the face of chronic illness care through innovative engagement and self-tracking approaches like the PAC and Passive PRO – but also for the patients themselves. As Jennie and Sami explained at the Learning Session earlier this month – “we weren’t always like this”. Starting as young kids getting handed diagnoses they didn’t ask for – Sami and Jennie have transformed into outspoken patient leaders; mentors and advocates for others living with IBD. It is their hope that many more will join them and that together – with a strong, sustainable culture of patient engagement through the PAC - they will continue to inform, educate and co-design a better way to care – one that takes into account the ‘person inside the patient’ and embraces the unique knowledge and perspective (and yes, expertise) that each patient brings to the table.



Here are Jennie and Sami’s reflections on ImproveCareNow and next steps for the PAC following the Learning Session

 

As patient advocates, there is something wonderfully refreshing about ImproveCareNow's Patient Advisory Council (PAC). It is unique in the sense that from the network leadership, all the way down to each center, the work of the PAC is celebrated and integrated in ways that outshine perfunctory patient involvement. PAC members are not involved because we have to be, we are involved because a) we want to be and b) care teams want us to be.

 

Enthusiasm and sincerity are synonymous with ICN, and yet the network is still an exemplary role model for movers and shakers in the pediatric chronic illness world. And so it seems only natural that the PAC emulate the inclusive, collaborative, out-of-the-box thinking as we build our council into an action-oriented, accessible group of patient advocates who actively engage in co-designing health care innovations, in brainstorming new and better ways to engage more patients, and in supporting the incredible efforts of everyone in the network.

 

The PAC strives to be a thoughtful and accessible resource for ICN care centers - as mentors to patients all the way through to colleagues in research. Over the next six months we plan to strengthen the council in the following ways: firstly we aim to develop and pilot, with the help of several centers, an effective recruitment strategy to welcome energetic and passionate patients into the PAC. Secondly, we believe it is important to create a community and culture of engagement and ownership amongst our PAC members. This is both to ensure members of the PAC are empowered by their experiences and that the council continues to grow and sustain itself. To that end we believe we must develop a sustainable succession plan.

 

As the co-chairs of the PAC, we remain extraordinarily humbled and thrilled by the endless encouragement and opportunities we have been afforded, and are admittedly a bit blinded by the spotlight. Nevertheless, we are honored to serve as patient advocates and work as part of this incredible network. As always, we will encourage you all (until we're blue in the face or there's a cure for IBD, whichever comes first!) to email us with questions, comments, suggestions, or anything you can think of! Like we said at the Fall Learning Session, we want to be your resources, your cheerleaders, your brain-stormers, and your colleagues.

 

You can always reach us at [email protected]

 

 


Three Stages of an Awesomely Gutsy Learning Session

Patient Advisory Council Members at the Fall 2012 Learning SessionAs Sami and I get super-duper-gutsy-psyched for the ImproveCareNow Fall Learning Session, we thought we’d put together quick snapshots of what an #ICNLS is like from our perspective. And voila, here they are, broken down into ‘Before,’ ‘During,’ and ‘After!

Before:


Sami: The excitement of planning and watching others plan. The Learning Session is a labor of love and - true to ICN's motto of "share seamlessly, steal shamelessly" - so much collaboration goes on behind the scenes in the weeks leading up to the LS. Despite the occasional stress, it's a blessing to be a part of such well-coordinated collaboration. My contributions to the LS are never just 'mine' - they've been shaped by a countless number of collaborators.

Jennie: Out of the mountains of emails and over-excited texts between Sami and I, everything was becoming real as plane tickets were booked and bags were packed. It’s kind of like coordinating a flash mob: dozens and dozens of people, all with the same passion for patient-centered care, group together from all corners of the country, lots of people doing one big dance. A lot of excitement, a smidge of nerves, and so very much gutsiness.

During:


Sami: Connecting with individuals representing all centers and roles within ICN. The PAC reps love meeting you - we want to know how we can best partner with you to meet your needs! I learn as much from casual hallway conversations and introductions at the LS as from the formal plenary and breakout sessions. One year ago, I didn't know my present PAC co-chair until I got off the plane in Chicago - so much can change in one year.
Tweeting, blogging, and sharing what I learn with you!! p.s. anyone can join the LS conversation real-time on Twitter using the hashtag #ICNLS.

Jennie: I remember my very first LS. It was as if I’d known everyone there forever – everyone was incredibly sweet and lovely and thrilled to have myself, Sami, and Jill (our amazing former PAC chair) there. I’ll never forget during the opening reception I was introduced to a few people, first names only, and it wasn’t until my head stopped spinning and I put two and two together that I realized I’d just met the biggest movers and groovers in ICN and the C3N Project. What struck me then was that they were just ordinary people who could hold conversations with me and I wasn’t stuck in some small ‘patient only’ box. The LS truly is an environment filled with excitement, respect, brilliance, compassion, and the unwavering attitude that we can all learn from one another (purposely ignoring the standard hierarchy of doctors versus patients/parents, it is doctors and patients/parents).

After:


Sami: Reconnecting and making plans for collaboration with those I've met over the weekend. The LS is "the charger" of ICN - it propels us through the next six months.
Working through the pages and pages of notes I'll leave the LS with - despite the work involved, the LS is magical because it allows you to come with scraps of ideas and gain the inspiration you need to transform those ideas into reality. Sleeping a little - and dreaming about the next Learning Session!

Jennie: There’s always too much excitement, too many possibilities, and so many new connections leaving the LS to get any sleep on the plane home! And that’s what’s so incredible and indescribable about the LS: we pass around and borrow ideas and fire from one another and there’s always so much to start doing! And importantly for patients and parents, we don’t become forgotten in the months between (we’re not simply a perfunctory part of the LS and then we’re dropped), if anything I’ve seen the commitment to meaningful patient engagement grow each time!



We can’t wait to update you after the LS!  But why wait? Learning Sessions have their own hashtag on Twitter so you can keep up with what's happening. Be sure to follow #ICNLS  – and we’ll be sure to tweet as often as we can!

J + S


Making the Team

Patient Scholar Sami KennedyIn October 2012, I arrived wide-eyed and a little afraid at my first ImproveCareNow Learning Session. I remember walking into the big room with my luggage and taking in the scene - so many brilliant clinicians and researchers I admired and greatly respected all in one hotel for one weekend. And here I was, too. I am nineteen - and so to many, I'm just a kid still. I didn't know what to expect, but I did expect to listen more than I spoke. After all, in a room full of some of my personal heroes, I was "just a patient."

 

As the inaugural Patient Scholars, to say that Jennie and I have been given the opportunity to live a dream would be an understatement. For a girl who expected to listen far more than she spoke, my voice has been valued more than I could ever have hoped or imagined. Jennie and I are just two patients - but to think about how many patient voices can and will resonate at future Learning Sessions excites me more than I can express. It's so clear to me now that "Just a patient" is not a concept that exists in ImproveCareNow.

 

On April 12th I returned to Chicago for the first Learning Session of 2013. Gutsy 2 (myself) may have been without her Gutsy 1 (Jennie) - but together through the art of virtual communication and the help of some friends, we didn't let a sudden strike of illness take away our weekend of hard work and joyous celebration. We shared in a presentation on self-management support and treatment adherence. We opened up about our stories and the accomplishments of the PAC (Patient Advisory Council) over the past year. We were inspired by stories of progress and achievement coming from all around the network. I even learned a new dance - the PDSA - aptly named after a fundamental quality improvement measure - because QI is really at the heart of making care better and thus rightfully deserved a spot at the heart of the celebration! (I expect PDSA to go viral on YouTube any day now.)

 

For a moment, when I landed in Chicago, I felt that familiar sudden shock of fear. For just a moment, I felt little again, like I was "just a patient" with a lot of ideas on the fringes of a great big community. But, this time, when I entered the conference room, I knew I belonged in this community. In one year's time, it's my hope that more patients will have felt the joy of this kind of welcome.

 

Five years ago today, I was waking up early - colon all cleaned out - and driving to the hospital with my mom, neither of us knowing I wouldn't be going home that day or that a whole new world was about to welcome us. Six months ago, when I arrived in Chicago for my very first Learning Session, I couldn't have even imagined myself standing in front of such a brilliant crowd and sharing my story - a story that only just begins with a diagnosis and hardship - on the level I did last weekend. Today, I can't imagine what comes next - but I know I'm humbled to have a voice that can share in the learning. I am eager to pass on the torch of leadership to the next Patient Scholars - because we all have stories, and many of the stories I heard last weekend touched me deeply and reminded me of why I do this.

 

I do this because, right now, another young girl and her mom are driving to the hospital - and they don't know what comes next - but I do.

 

That young girl will get better. And maybe, if we all reach our hands out together to say that everyone can make a difference and is valued on our team, she'll be able to help change care for the better for the next girl with IBD.

 

Like any good team, we are more than the names on the backs of our jerseys when we unite.  In this Network we are more than the names we go by: patient, parent, researcher, clinician. I am so proud to have a jersey on the ImproveCareNow team.

 

Together, we have quite the winning streak. And one day, I really do believe that we will achieve that cure, together.


Live Tweeting from the ImproveCareNow Learning Session

Follow the ImproveCareNow Learning Session on Twitter with the official hastag #ICNLS


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