ImproveCareNow Parents


My Interview with Melida from the ICN Exchange Team



Melida, can you give us a professional snapshot of who you are?

I have an elevator speech, “My name is Melida, I am passionate about Information and Knowledge Management & Knowledge Creation within research communities.  I believe good data makes all the difference.”  I also have a professional identity:  Melida Busch, MLIS, and Director of Cincinnati Children’s Edward L. Pratt Research Library, of which I am proud. I work with the @ICNExchange team which provides me the pleasure of being connected to the ImproveCareNow community.



What will you be sharing at the Community Conference?
My colleague Sheryl Sheldon and I will be presenting on the use of the ICN Exchange as an empowering tool for all members of ICN to “share seamlessly and steal shamelessly”. The ICN community produces a lot of tools and resources, but until we use them, share them and improve them, they really aren’t very meaningful. We’re hoping to make our break-out session very practical, i.e. “This is how you use the ICN Exchange”, while reminding folks that it’s them and not the tools that make the ICN Exchange powerful. Hence the name for the session:  “You are How Data Becomes Knowledge”…

How does this session/focus pertain to parents?  Or how can parents use the information as part of our mission to help improve care.
Obviously partnering with patients and parents is a key tenant within the ImproveCareNow community. I think increasing both the amount and the diversity of the tools, resources and stories that patients and parents share on the ICN Exchange will have a direct impact on the improvement of care in the treatment of children with chronic IBD throughout the network.

Also, sharing in the commons increases your sphere of influence, not only in the potential number of people reached, but also in the ability of those whom you do not currently know to find your contributions later. You have the ability to make a big difference in your community long term, with what feels like such a small action.



 


What is Smart Patients? And why are we partnering?

Smart Patients logoThe 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!


The future of IBD research is in your hands

ImproveCareNow has partnered with Patient PrioritiesThe 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.


The Story of Empowered by Kids

Justin Vandergrift is a co-founder of Empowered by KidsJustin 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.

 

EBK logo

 

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:

 

M Troy Tweet EBK

 

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

 


Learning & Leading Together

When I’m not leading improvement activities in the ImproveCareNow network, I’m busy raising a family. As a parent of young kids, I do a lot of bedtime reading. Recently, I was reading The Little Prince (Le Petit Prince) by Antione de St. Exupery to Finn, who is 7. After a few pages, Finn just wanted to go back to his other book (I will have to try again in a few years!) but it made me want to reread it after a long time.

 

This quote appears not far into the book:




"Grown-ups love figures...When you tell them you've made a friend they never ask you any questions about essential matters. They never say to you "What does his voice sound like? What game does he love best? Does he collect butterflies? Instead they demand "How old is he? How much does he weigh? How much money does his father make? Only from these figures do they think they have learned anything about him."

 

As ImproveCareNow builds an awareness and engagement campaign aimed at bringing many, many more patient and parent partners into our work, we have such wonderful models for storytelling about the “essential matters”—the story of the whole person, not just the figures like lab results, medications, and BMI. Our Patient Advisory Council (PAC) members so often share their stories as people, not just patients. They articulate their journey with IBD in ways that are wise beyond their years and make us pause and think about how we can try to be wiser and learn from them. Our Parent Working Group members have challenged us to see their children’s whole lives and faces when we look at the data we use to drive improvements. And our colleagues at Empowered by Kids are using their amazing commitment and individual talents to reach other families who need to expand their own “village.”

 

I am off to Chicago tomorrow for the ImproveCareNow Fall Learning Session. Learning Sessions are a time to celebrate the achievements of the past six months, but also to ponder how best to leverage the strengths of our community to do even more together. The essential questions for us now are: How will this Learning Health System reach and engage and partner with many more parents and patients? How can we pair the right people with the right action – bringing new energy and perspectives to how we run the whole network, and how things are done at each individual care center?

 

We know we will be even better at achieving our aims (the most important of which is getting more and more kids into remission!) with more people working with us, sharing their experience and talents and perspective. So as we plot out next steps for ImproveCareNow, I think we need to stay focused not only on “figures”, but also on “essential matters”. Our many parent, patient and clinician partners are already teaching us the importance and the impact of a story. I know I can’t wait to hear from—and really learn about—more and more of them.

 

The better we know each other, the easier it will be to create the future of ImproveCareNow together and to find joy in learning and leading together.

 

See you in Chicago!


DIGMA: Group Medical Appointments

In the decade I have lived with Crohn’s Disease, I have steadfastly steered clear of support groups. It always seemed as though I were resigned to a couple of options in talking about my Crohn’s: 1) stick with my private medical appointment with only my parents and doctor, or 2) cautiously venture into the mysterious world of support groups. I exclusively favored the first option, and carefully built my community of friends with IBD a la patient advocacy and volunteering. And while that strategy worked for me, I only recently realized there’s another way.When Sami and I were invited to participate in the Children’s Hospital of The King’s Daughters (“CHKD”) team’s demonstration of the group medical appointment (better known in the medical community as Drop-In Group Medical Appointments, “DIGMA”) at the ImproveCareNow Spring Learning Session, we were happy to help. We were admittedly unaware of how a DIGMA session worked; and arguably incredibly naïve about the feasibility and sustainability of a model that – at first glance – seemed to be the very kind of ooey-gooey-woe-is-me support group we had intentionally evaded.

 

Children's Hospital of The King's Daughters at the Spring 2014 Learning Session during their DIGMA demoChampioned by the passionate team at CHKD in Norfolk, Virginia, the DIGMA model has enjoyed strong support from clinicians and families alike. Dr. Marc Tsou was introduced to the idea in the late 90’s when a parent gave him an article about the group model structure, about which he says, “It seemed to make so much sense. I thought of how many times in the day I’d say the same medical information to several families. Say that information six times, how inefficient, then think about how much that group appointment concept makes sense.” Dr. Tsou saw an opportunity to meaningfully build on the clinic’s collaborative culture; “Elements were there, the right type of people and group. The doctors were the ones who said we’ve got to do this, we’ve got to do this, the time was right, it was almost fate.” Fueled by his fearless nurse, Terri, Dr. Tsou and the CHKD team set about bringing the DIGMA model to their IBD families.

 

The first step was reaching out to a variety of clinicians – such as dieticians and social workers – to ensure that the group visits did not just include patients & families, but also a group of diversified care providers. After sending out an email to potential clinician participants, positive responses began to rush in. “For the most part all responded and had someone to come and participate,” Terri says. “Everybody was super receptive to it, they’ve showed up at every one since.”

 

Annette Kulzer, a mom of three boys including 16-year-old Kolin who lives with IBD, has been instrumental in running the group model appointments. “As a parent,” she says. “It opens doors to meet people we would have not met. If we were in another setting, we wouldn’t hear those stories.” An early adopter and believer in the DIGMA model, Annette has regularly provided a parent’s perspective into how the group appointments run. For example, after a group appointment with female and male patients, Annette suggested having separate groups for each gender and for different ages ranges to encourage comfort and participation. Annette and Kolin emphasize the sincerity of Dr. Tsou’s malleability in running the group sessions, and they always appreciate the weight their feedback holds.

 

In addition to the accessibility to a variety of clinicians and retaining certain elements of the traditional solo medical appointment (e.g., a one-on-one physical exam), the DIGMA model had a surprising but welcome impact; it provided novel insight for patients, parents, and clinicians alike through storytelling. Annette remembers a teenage patient who recounted having great difficulty taking the bus to sporting events with her teammates, since she was worried she might urgently need to use the bathroom. The story challenged Annette to reconsider Kolin’s hesitation to ride with his teammates to a game, as she came to understand that her son – who rarely complained – shared a similar fear that had gone unspoken.

 

Jill, CHKD’s social worker agrees that sharing stories can be incredibly eye-opening, and says, “It’s very, very different when you can look into the face of another mom or another dad or another kid, and say I understand this. Okay here’s somebody like me, they’re doing alright.” Dr. Tsou adds, “There was one mom who broke down into tears, she got very emotional, you think gee these sessions no one will share very much, but really they’re sharing their souls and baring their deepest fears. People might be skeptical but it really happens, but that’s super gratifying, a bit surprising, and confirmed to us that we’re on to something and something that deserves the attention and energy to keep it going.” When asked about group session attendees who were unsure at first, Annette says, “We’ve had many patients and parents who come in resistant, but within 15 minutes they’ve had the Kool-Aid.”

 

The group session can also be liberating for patients, who perhaps fear that IBD will be an “albatross around their neck for the rest of their lives.” Kolin enthusiastically agrees, adding, “Telling people what you’re going through helps a lot.” Positive and on target support grows organically from the patient-driven and clinician-facilitated model, and Kolin says, “You’re going to get so much out of it.”

 

While the organizational burden was heavy at the beginning, the team has happily tackled logistical issues to provide this innovative practice to their patients. Dr. Tsou explains, “The group appointment allows for so much more sharing of feelings, fears, and that’s really what so many families want and need and it allows it in the framework of still providing care. We’ve all had to learn a little different way of doing it.” Terri adds, “No harm in trying something, and I would guarantee that if others tried this model, they wouldn’t go back, it really does impact patients and families.”

 

But the potential of the DIGMA model doesn’t stop there: the team sees practical applications to rural communities (i.e., being able to run a group session in a rural community to maximize patients who can be seen), and across medical specialties. Dr. Tsou says, “I think it’s going to be more mainstreamed. It is the way medicine will be practiced in the future, we’re at the leading edge of it, which is cool.” Kolin adds, “I really want it to spread. I was really skeptical of it at first, but I really do enjoy the DIGMA model.”

 

A group medical appointment is, at its core, a treasure chest for patients, families, and clinicians; the ability to offer a holistic, patient-centered, and team-approach to pediatric care is innovative and vital to the collaborative and transparent culture championed by ImproveCareNow. The passion, integrity, and dedication the CHKD team has for optimizing chronic illness care is not only evident, but most importantly completely contagious. “We’re all passionate about our patients,” says Terri. “We were born to do this, it’s been really wonderful. Everyone had the spirit, it was right for us.”

 

 Jennie


Sometimes you don’t know what you’ve got till it’s gone…


The announcement from Daniel McLinden that the ICN Exchange was back up.

 

Recently, the ICN Exchange needed to undergo maintenance unexpectedly for two days. Some people in the ImproveCareNow Network probably noticed it more than others. I know that as someone who has come to rely on it to keep up with what centers are working on and looking at, I was keenly aware of its absence.  So you can imagine how thrilling it was when it came back online!

 

Now that the Exchange is back up and running (and better than ever - with plans and resources in place to prevent such outages in the future!) it occurs to me that even a quick glance at the Exchange clearly shows the richness, diversity, vibrancy—and the multifaceted dynamics of our community.

 

When I glanced at the Exchange today this is what I saw:

 

Children's Hospital of The King's Daughters' DIGMA model demo video from the Spring 2014 Learning SessionImproveCareNow centers, like Children's Hospital of The King's Daughters, jumping in and collaborating with parents, patients, and other centers to make sure that we are all learning together!
Call for clinicians to sign up for a focus group to dicuss what has worked and what hasn't worked when trying to get patients and families involved in QI work at ImproveCareNow centers.

 

Opportunities that highlight how much we really, really want and need to learn from each other so we can collaborate even better!

 

The first ever announcement for a ImproveCareNow Dietician webinar Multidisciplinary partners, like the RD group, are staying connected with each other and getting organized so they can The new online 90 day goals tracker for ImproveCareNow centers to track and monitor their Improvement project goals and progress quarterlytake on projects that will build their visibility and leadership in ImproveCareNow.

 

ImproveCareNow QI teams are becoming even more accountable and transparent in their day-to-day QI work.

 

The Parent Working Group of ImproveCareNow is now setting and working on 90 Day Goals and in the spirit of transparency is sharing them with the whole NetworkParent Partners are setting their 90 day goals, tracking their progress and keeping the Network informed!The Patient Advisory Council request to ImproveCareNow participants to co-produce an Ostomy Toolkit for patients with permenant or temporary ostomies.

 

And finally, amazing patients around the country are teaching us more and more every day.


 

And that is just a quick glance! So thank you to everyone who has been a part of helping us build this vibrant community. I, for one, can’t wait to see where the community goes next!



The ICN Exchange is an internal knowledge-sharing platform that the ImproveCareNow Network uses to communicate, collaborate and innovate across the miles. Clinicians, Researchers, Patients, Families and Improvers are able to log into the ICN Exchange and share seamlessly and steal shamelessly!  The ICN Exchange has enabled ImproveCareNow to extend our “all teach, all learn” collaborative approach to medicine far beyond our monthly webinars and twice-annual Learning Session. It allows us to identify ideas and best practices in pediatric IBD care and introduce them into the care delivery process much faster—improving care for our patients now.


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


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