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

Before:

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

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

During:

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

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

After:

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

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

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

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

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

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

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

Dave Davis :: Dreaming the Perfect Exchange

If you haven’t noticed, the ICN Exchange team thinks you’re special. Why? Well, when we set off on this journey to create...

...we weren't really sure how to do it. So we asked for your help, and you have continued to tell us what works and what doesn't ever since. You have given us your time and your ideas and we hope you can see the difference it has made in making the ICN Exchange the knowledge-sharing tool you need. A platform that helps all of us pursue our shared mission of transforming care, health and costs for all kids with Crohn's disease and ulcerative colitis - of being the 'cure for waiting for the cure'.

We have always known that our work is rooted in community-building, and connecting people and ideas; not necessarily in technology. Your participation continues to confirm our belief.

Here’s what we've learned, as you have joined our team in dreaming of the perfect ICN Exchange:

• Multiple “repins” of the same item can be confusing

• When an item is “repined” the conversation happening in the comment section does not transfer

• It would be great if you could search for a person, and if the search function were more efficient generally

• It can be hard to find what you are looking for, i.e. the navigation of the site should be more intuitive

• It’s difficult to upload and share items properly, especially if you have a lot to share

• On some mobile devices, the ICN Exchange experience is not great

ICN Exchange users, please let us know if we've missed anything.

P.S. If you want to learn even more about the ICN Exchange, check out our Harvard Open Forum Idea submission, an effort led by Dan McLinden. This is our response to the question: What proven innovations have you created that would enhance health care value in the U.S. if broadly disseminated?

URL for Harvard Open Forum: http://t.co/l3oe2Hbr9k

BTW you can follow the ICN Exchange on Twitter, it's a great way to keep in touch & tells us what you think.

What are the research assets of ImproveCareNow?

Certainly the large and rapidly growing database of patient information is beginning to be tapped as a research resource.

But the ICN community itself is a powerful resource as well!

The Research Committee has received several applications to conduct survey research. After asking the ICN community for feedback, the infrastructure is now in place to begin gathering a list of survey recipients, and we need you to sign up!

Why should you participate in survey research?

• Your views are important, and you can make a contribution to advancing knowledge and building a stronger network.

• Surveys are an important way to learn more about things such as research prioritization, trends in diagnosis and treatment, and how to build a better network.

• You support your colleagues with your participation!

"Survey - based research within ICN gives us the ability to gauge how pediatric GI practitioners approach specific aspects of IBD patient care in a quantifiable manner. This augments our "real world" understanding of the practices and attitudes of health care providers within ICN and therefore, can highlight areas of clinical practice we can target in our quality improvement efforts." - Sandra C. Kim, M.D.

Because we recognize the flood of emails you already receive, the Research Committee elected to create an opt-in mechanism that will allow investigators to target survey research only to those who want to participate. Your ICN key contact person has the ability to add or edit the contact information of all your team members (including all of your providers) in the ICN Contact Management System. Simply have your key contact select the Survey Study List button for all team members who want to participate!



Our success in survey research will depend on getting a large cohort of the ICN community involved - don't delay - it's time to opt-in!

Steve Steiner
Co-Chair, ICN Research Committee

At the NIH Collaboratory Strategic Advisory Group meeting on value and sustainability of Learning Health Systems, I met Sachin Jain (@sacjai), a physician now working for Merck and representing pharma at the meeting.  He was delighted to tell me that he had published a paper in 2012, about Bridging and Bonding Capital, in which ImproveCareNow was mentioned, and he subsequently sent a link to the article.  I believe ImproveCareNow is promoting both Bridging and Bonding Capital.

I recently traveled to Sweden and had the opportunity to talk to many people about the work that ICN and C3N are doing. Now here in the US, I am known for talking at length about this work, all the time, to whomever will listen. But sometimes it takes being far removed from it for a few days—and seeing the reaction of a completely new community—to not only gain a deeper understanding of what we are building together but also to articulate it in ways I hadn’t before. In other words, I got to look in from the outside.

Monday mornings are supposed to be difficult. There’s no such thing as a “Case of the Thursdays.”  Dragging out of bed Monday morning is supposed to be hard. Some weeks it is. Just this March there was a week where it just wasn't. I’m not entirely certain I even hit the snooze button (gasp!). I had just spent my weekend, the American worker’s time for decompressing, in meetings. Lots of them. But these were not just your average meetings – they were the ImproveCareNow Learning Session meetings.

Following them, I arrived back in Cincinnati with renewed enthusiasm - a renewed enthusiasm that invariably comes from attending these sessions. See, I’m a data guy. We’re typically pretty black and white - no grey. We come to the table with preconceived notions of what’s going to work and what’s not. Clinical data managers are not usually innovators. They’re not expected to be. In many cases, they’re not allowed to be. I can tell you that they’re missing out. Fate or karma or luck or whatever steered me away from the world of highly regulated (read: robotic, monotonous, widget-producing) clinical trials work, toward ImproveCareNow where I find myself encouraged to not only be rigorous, but also innovative in my approach to nearly everything.

As ImproveCareNow’s data manager, I've seen things I never would have imagined. We've abandoned the old query-and-response method of data cleaning and replaced it with a Quality Improvement (QI) based method of data quality improvement. When I tell my old colleagues about this process, I get a range of responses from a polite you-know-better-than-that tap on the head with a smile and nod, to downright indignation. Many of my peers have expressed reservations and have been kind enough to tell me that my approach won’t work. This is how I know what we’re doing IS working.

Any time those that “know” tell me that I’m crazy, it’s time to push on. Why?  Because it works. In 3 years, we’ve been able to improve the quality of ImproveCareNow’s registry (database) in terms of completeness, accuracy and timeliness not by adding a mountain of burdensome queries and rework to the care centers’ already full plates, but by doing what we teach in this network. Becoming partners in data quality with the ImproveCareNow teams working hard at each center, by applying QI science to work and processes of our central data management team, and by applying the same QI methodologies that have enabled ImproveCareNow to raise remission rates to places we didn’t even think possible. We’re taking the quality of the data, and by extension the quality of the data-driven tools and improvement that are developed and implemented by care centers, to places we were told we couldn’t go.

I’m not naïve enough to think that anything we try is going to be a success. Quite the opposite. Part of the journey is stumbling, falling, getting back up and applying what we’ve learned. And that’s what makes it easy to drag myself out of bed on those Monday mornings and get right back to it.

Dan Jeffers, MS, CCDM is a certified clinical data manager working at Cincinnati Children’s Hospital. When he’s not coming up with innovative ways to make the data in ICN2 even better, he’s chasing his kids and chickens around his Cincinnati farm.

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.

Championed 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

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:

ImproveCareNow 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!

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

Multidisciplinary partners, like the RD group, are staying connected with each other and getting organized so they can take 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.

Parent Partners are setting their 90 day goals, tracking their progress and keeping the Network informed!

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.

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!

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