Back to [basics] school

I have been working with ImproveCareNow – a Network that uses Quality Improvement (QI) techniques to bring about improvements in the care and health of children and adolescents with Crohn’s disease and ulcerative colitis –  for nearly 3.5 years. And, yet I have not had any formal QI training. That ends now, because I’m taking the Spring 2014 QI Fundamentals series.

QI Fundamentals is a series of seven, hour-long webinars lead by one of the Network’s QI coaches and a project called an Applied Learning Opportunity (ALO). The curriculum has been designed for teams who have just joined the ImproveCareNow Network and new members of established teams. By the end of our six months together, a QI  Fundamentals class graduates with knowledge and understanding of basic QI skills and tools that ImproveCareNow uses to drive measurable improvements.

New teams are encouraged to focus their ALO on registration and data collection, which means many will choose a project that helps them identify IBD patients in a much broader patient population. This basic ability is so foundational to the QI work that each team will be doing in the future. Remission rate for IBD patients at each center, for instance, is calculated based on the total population of IBD patients – so dialing in a process for knowing all patients with IBD is critical so a team can accurately see how they are doing in terms of getting more patients into remission and keeping them there.

You’re probably thinking to yourself, the number of patients with IBD (which we call a “denominator”) must change over time as new patients are diagnosed and as others transition out of pediatric care. And you’d be right. But don’t worry, the ICN data management team has got that covered. They request quarterly updates from all participating ImproveCareNow centers. So, I’d say it’s pretty fundamental to know how to identify patients with IBD at your care center.

This begs another question. Since I’m not part of a team at a care center (read: I don’t see patients), what will my ALO be? Well, I’m glad you asked. The answer is: you’re looking at it. Yup, I’m focusing my ALO on LOOP. In fact, here is my aim:

Applied Learning Opportunity AIM for Sarah NocitoSo, I’m walking the walk – reading up on QI, planning and carrying out my own ALO, complete with aims and run charts and data oh my, and <shudder> probably even presenting my results at the Fall 2014 ImproveCareNow Learning Session (which is September 4-6, if you’re wondering).

Look for my next post after the second Fundamentals webinar on April 9th.

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:

http://www.youtube.com/watch?v=1nVabFuOWho

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:

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

Sitting In It

Or “The Crystal Ball Method of Informed Consent”

Why didn’t I know how hard this was going to be?  When is it going to get better? Will it? Is it even worth continuing?’  I don’t know how much longer I can keep going, especially when I hear there isn’t an answer to this yet; my pain isn’t going away!’  As a child I felt that myself sometimes, and I think my patients feel that way sometimes, too.

I try to help patients and families for a living – I teach, support, problem-solve, empower.  At least those are my goals. I think about my patients, I listen to them to understand ways I might help them help themselves.  Nevertheless, I find myself at times staring into my patients’ eyes, helpless to give them an immediate sense of release from pain, a sense of hope that better things are coming. And, during these times, I wonder to myself, ‘How can I tell them that part of coping is preparing for moments when there isn’t an answer, a solution, even just a momentary end to the pain?’

A few weeks ago I sat in a room with a patient I had not met before.  Here is what I already knew about him from the team: He is a bright, engaging, easy-to-like young man, very selfless and giving to others, who had suffered several years ago, found help, and got some good parts of his life back.  He is a terrific patient; he and his family listen, they follow recommendations, they reinforce the team as much as the team tries to reinforce them. His parents suffer when he suffers; and the team suffers with them.  But things had recently not been going so well!

When I met him, the flare had already been going on long enough to cause him to quit thinking so much about his future, quit enjoying some of the things that gave him pleasure.  He wasn’t able to be in school; he wasn’t as connected to his peers now; his daily life lacked any, for want of a better term, joy.  I don’t think I can say he was completely hopeless but he admitted it was difficult to find hope.  This bright, engaging young man had been trying to keep up in a negative, pain-filled situation and had lost ground in his own quest.  And there I sat, trying to help him find something to hold on to, something to move forward with and give him hope.

If I could, I would take a crystal ball and go back in time with him.  I would display the most excellent times, when he felt no symptoms and just moved forward with the normal joys and struggles of development; friends, school, identity development, relationships.  They are all hard enough!  And they all come with great potential for fun, meaning and growth.

Then I would show him the flares; the pain, blood, worry, frustration.  I would tell him how long before things got better; I would help him understand that sometimes the best coping mechanism is just sitting in it, with the unknown, and going on, being at peace as much as possible.  That coping can be finding a different thing to focus on, as a distraction and a way to keep moving forward, a support to use that feels comparatively better than being without it.  That it is actively planning how to keep up with things like friends and relationships, but it is also standing up and saying “I don’t like this and I want to try something different.”  And, after that, not stopping until he is heard and feels some control in his situation, with the medical team if not his body.

As a child I remember, at times, feeling very alone in my uncontrolled asthma, and thinking, when I was explaining my symptoms and my desire to feel better, that I was yelling weakly, but as hard as I could, into a canyon. And no one yelled back.  It got better, but a few times I didn’t know it would. I don’t want my patients to feel that.

Sometimes coping is not being able to do anything about the pain or frustration but having the ability to hang on, and know someone is hanging on with you, beside you, for you; and that, together, neither of you is going to give up. It’s not great, but maybe it’s good enough, and it can be enough for today.