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!

As we prepare for #ICNLS

Fall 2014 ImproveCareNow Learning Session cover photoAs we prepare to bring together people from across the ImproveCareNow Network for our Fall 2014 Learning Session, I wanted to take a moment to share a few things with you.

Why we do what we do:

What’s in store for Learning Session attendees: LS14F Final Agenda

And how can you join @improvecarenow and follow all the #icnls action on Twitter: 

If you are joining us at the Learning Session and will be tweeting, type your Twitter handle in the comments so we can be sure to follow you!

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The PAC is Ready for ICNLS! Are YOU?

It seems like just yesterday the Spring Learning Session was around the corner! We’re just FOURTEEN DAYS away from the 2014 Fall Learning Session – can you believe it!? As usual, the Patient Advisory Council (PAC) is excited, thankful, and busy preparing for the opportunity to contribute to the LS. Once again, the PAC Leadership is gearing up for busy and productive collaborations and presentations, and this time, we get to personally introduce two new PAC Scholars – Isabelle Linguiti and Bianca Siedlaczek!

14 days to go, 3 incredible days in Chicago, 2 amazing new PAC Scholars, and 1 fantastic session. Are you not excited yet!?

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PAC representatives showing off their gutsy spirit at the Spring 2014 Learning Session!

Just in case you aren’t bursting with gutsy energy yet, we wanted to give you a preview of what to expect from our two new Scholars. These young ladies are intelligent, creative, passionate, and spunky. We asked them to tell us (and YOU!) a little bit about themselves and their ideas:

Isabelle, 19, Philadelphia

“I’ve been frustrated with communication between patients and doctors because I feel like they can often turn stressful when we already have enough to deal with. Rather than sitting there with my frustrations, I feel like ImproveCareNow gives me the ability to do something to change that.”

Favorite Candy: Dark Chocolate

If I could travel anywhere, I would go to….Iceland! That was my one wish, and I got to go!

In my free time, I like to….get creative and do art projects!

My role model is….my boss at CHOP. She herself has dealt with a lot with her health and is very successful. She wanted to help me succeed and has guided me every step of the way. She is very nice, and giving with her talent and time.

My ideas? “My vision for the Communications Task Force is to use it to create a program that allows patients to have a direct role in educating doctors on helpful listening and communication strategies when working with patients.”

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PAC members working hard at the Fall 2012 Learning Session (Back when we only needed half a table!)

Bianca, 15, Michigan

“I love that ImproveCareNow is more than just a collaborative effort between doctors and nurses; it involves patients, too!”

Favorite Candy: Sour Patch Kids

If I could travel anywhere, I would go to….Italy!

In my free time, I like to….take my dog on walks.

My role model is….my maternal grandpa. He is incredibly strong. He survived World War II before relocating from Italy to the United States and making a living for his family.

My Ideas? “Nurses have a lot of helpful knowledge and experience that would be helpful to PAC. Becoming more collaborative with the nurses of ICN can give the Advocacy taskforce another perspective for projects.”