#ICNCC15S

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, 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.

We’re all in this together.

Sarah Myers is the Executive Improvement Director for ImproveCareNowA few months back I wrote about the importance of stories as we work together to improve care for  kids with Crohn’s disease and ulcerative colitis. And what a wonderful collection of stories we are building! But we also know that data and measurable outcomes (like % of kids in remission, and % of kids NOT taking steroids) are really important too. One of the most important tools ImproveCareNow (ICN) teams use is called 90-day goals.

90-day goals are meant to ground and shape teams’ quality improvement (QI) work. Teams use QI to see where the gaps are in the care they deliver to each patient, and all patients, they see with IBD, and figure out the best ways to close those gaps (or make real improvements in care and outcomes). These goals also provide a rallying point for team members, keeping them aligned, focused, and motivated. Done well, 90-day goals are incredibly motivating and help the team strive to achieve big things together, while also honing in on the individual (sometimes nebulous) ideas for improvement. In QI it is always important to refine your goal or aim into something specific, measurable, (hopefully) achievable, realistic, and time-bound (SMART).

I have been reflecting on the diverse goals that ICN teams set for the last quarter of 2014. I want to share some of my favorites – and give you a little snapshot of the work that is going on across the Network. Whether new to the Network or having years of experience with collaborative quality improvement, ICN centers are working to create systems that are sustainable and manageable, to better understand the needs of individual patients and groups of patients, and of course to get more patients into remission and keep them there.

A brand new center: “We will register 70 patients total (50% of our estimated eligible population).” This reflects an important focus on the basics—getting patients into the ICN registry so they can benefit from the tools available to learn from their data and make related improvements in care.

A team that is gaining momentum after about six months of participation in ImproveCareNow: “Each faculty will review a Pre-Visit Plan on at least 25% of their IBD patients.” This center has worked hard to get patients into the ImproveCareNow registry. They are now ready to focus becoming a proactive, prepared practice team—assessing the needs of patients prior to visits. They are starting small so that they can test different changes and learn as they go…before spreading to even more patients.

A “veteran” team aiming to make sure that patients transitioning to adult care are prepared for that major milestone:By December 31, 2014, we will achieve…20% increase in patients 16-18 years old with a transition plan.” This center knows that transition to adult care is so much more than just making a referral to an adult physician. They want to know that their patients have the knowledge, skills, and tools they need to navigate that journey.

And a team that has already achieved an impressive 80% remission rate, pushing to see how high they can go: “By December 31 2014, the remission rate will  consistently be 85% two of the three months of the quarter.” This center has built a reliable, proactive, and patient-centered system. They and others are setting a new bar for the outcomes that are possible when all members—patients, parents, clinicians, and improvers—work together!

It can be hard to explain what a complex system like ImproveCareNow is all about. There are a lot of moving parts! After all, we can all agree health care is very complex! As a leader in this network, I know we often talk about the big innovations, the patient stories, and the work we do to keep this community connected across the miles. But these individual goals give a real concrete look at part of the foundation of this network’s success. The day-to-day, on-the-ground work that goes on at 71 (and counting!) ICN care centers across the US and UK.

It’s important to point out that the goals of brand new teams, which focus on ensuring every patient with IBD is included in the ImproveCareNow registry and that data is 100% complete and accurate,  are no less important than the goals of more experienced teams. Once a solid foundation for improvement is laid, teams are able to focus on achieving even better outcomes (like higher remission rates). It is a continuum—a journey that all centers begin when they join ImproveCareNow. And as a Network that encourages “seamless sharing and shameless stealing,” none of the centers are working toward these goals alone. Experienced teams become mentors and coaches for newer teams even as they work toward their own goals.  And newer teams are able to go further, faster because we’re all in this together.

Thank you to the ImproveCareNow teams for another amazing set of goals. We can’t wait to see what you achieve together!

[Editor’s note: Ask your care team about their ImproveCareNow goals next time you’re in clinic.They’d be glad to share! Not sure if you’re at an ICN center, find out here.]