Performance Feedback

Posted on 10 April 2013 by ImproveCareNow

To improve at anything – be it your grade in history class or your best time at the 50-yard dash – you need to know how you’re doing. This can come in the form of a grade or where you finish in a race. Without this type of feedback, you can never be sure if you’re on the right track.

At ImproveCareNow, we want to provide the best pediatric and adolescent IBD care for all of our patients. To make sure that we are on the right track, ImproveCareNow centers receive regular feedback in several key areas related to IBD care. This information helps centers know how well they are reaching their goals and helps them make progress in areas that need improvement. (Click here to see an example of an ImproveCareNow Key Clinical Measures Report.)

In addition, ImproveCareNow centers have access to new tools that allow patients to provide feedback to the individual doctors and nurses who provide their care between visits—they want patients to be activated and ready to participate in their care.

Additionally, with the introduction of automated pre-visit and population management tools, doctors and nurses can be better prepared for visits. They can pinpoint areas that need attention and learn from the care provided by other providers at their center. The more timely the feedback, the sooner our providers can address aspects of your care.

We are excited to provide tools that help your doctors and nurses do a better job helping you achieve improved quality of life and better health!

[Editor's note: This post was contributed by Theresa Todd, MPH, MA. Theresa is the Improvement Coordinator for Gastroenterology at Nationwide Children's Hospital in Columbus, OH and it is her responsibility to help the IBD team with quality improvement goals. Theresa has been part of the Nationwide team since July 2010.]

To Nudge or to Push

Posted on 23 January 2013 by noel jacobs

Mother to teenage son: “Hey, have you taken your medicine yet?”

Son (playing video games): “I will in a minute!”

Mom (wondering whether it’s worth the fight): “You know, you’re gonna move out in a few years and you’re going to have be able to do this without me telling you. And you know you don’t want flare-ups if you can help it!”

Son: “Nope, you’ll have an alarm on your phone and you’ll just call me and keep nagging until I take it. Can’t wait for that!” [insert sarcasm]

And, end scene. Mom walks offstage slowly, imagining how many more times she’ll ask before he takes it, if he’ll ever fully be in charge of his body, maybe whether he’ll be living on her couch at 40….

Is this exaggerated? Maybe. But I know many families in this boat. They don’t have emergencies, and they get a clean “Good job, no problems this quarter!” during the GI checkup. The child has a good quality of life when it comes to school and sports and social time and… it’s because mom stays in charge. She’s in charge of the medicine, the questions for the doctor, all the IBD knowledge necessary to lead a good life. She’s running this show!

How much should we push our teens to start taking charge and showing responsibility? It’s difficult. If we push too little, they don’t grow up. If we push too hard, they retreat and we keep doing everything anyway “because someone has to.” And by the way, ‘Why wasn’t that last relapse and hospitalization enough to make him wake up and start doing something about it?’

Deciding when responsibilities and consequences belong squarely on the shoulders of a teenager is difficult. So I believe in not placing it squarely on their shoulders. Too many experiences in your child’s life will happen too fast for them. Generations ago children were shown early the value of very hard work and developed the ability to value important things in life. In the culture of today these milestones are sometimes delayed too long and kids end up not being ready for adulthood’s responsibilities. George Bernard Shaw is credited with writing: “Youth is wasted on the young.” We look back on our own youth longingly, and wish our children could appreciate what they have while they are in their best form with the fewest problems and fewest responsibilities. But then we’re frustrated when they’re not ready for adulthood.

What I recommend to my parents, and work with them on during transition consultations, is a very intentional, dedicated and patient shift from parent-only to parent-child partnership through contract. Remember, childhood and adolescence are not just about fun, freedom, and all the time in the world. In all times and across all cultures youth is a time of great education and preparation. But we sometimes lose our perspectives as adults and forget that we are supposed to be their most important teachers. So here’s how we can teach them to prepare for adulthood. We show them, we do things together, we set expectations, and then we structure their lives so they’re rewarded for moving forward, for accepting apprenticeship. And while they’re learning, while they’re taking a little more on for themselves, we encourage and reward them for trying and for succeeding (and we stand by them when they do not succeed). After all, mistakes are proof that you’re trying, right?

Mother to son: “Okay, honey. I am going to tell you something important. Right now, I’m your mom, and I’m used to being in charge of your health. I use my insurance, I make your appointments, I take you to the doctor, I ask the questions, I go to the pharmacy, I pick up your medications, I put them in the day minder boxes, and I nag you until you take them. You’re going to take all of this over one day, because I love you and you have to live your life; I can’t live it for you. It’s not going to be today, or tomorrow; it’s going to take a while. But we’re going to do it a little bit each day, together, until you feel good about it, until you know how to solve the problems that come up, and until you are absolutely on top of everything you need to do to live well on your own.”

This principle applies, of course, to laundry, to keeping a room clean, to fixing food in the kitchen, to homework, even to friendship and romantic behavior. It is apprenticeship. The training starts early, it starts deliberately, and is more difficult for the parent than for the child. Again, this is the way it’s supposed to be. You cannot point, demand, and then leave responsibility for medical adherence in the hands of a child. But you can hold the hand of the child, guide them through the experience, and slowly transfer, through gradual steps and support, all the responsibility they’re ready to accept. And they’ll be ready. Ask a psychologist, like me, who has seen parents and children do this well.

Start today. Age 8? Great. Age 12? Go, go, go! Age 18: It’s time to sit down and have a conversation. And roll your sleeves up.

Mother to son: “Honey, you did a great job this week getting your pills organized into the day minders while I watched, and taking all but two of your evening pills just based on your phone alarm. I’m proud of the progress you’re making, and I want you to know I know you’re going to be ready for what life throws at you! I’m behind you all the way.”

Son: “Mom, it’s not like I’m leaving tomorrow! Don’t get all gushy. And don’t EVER do that in public.”

Shoulder to Shoulder

Posted on 6 December 2012 by jendavid91

A children’s hospital is, at its core, fundamentally different than an adult hospital; not better or worse, but different. My memories of my pediatric hospital include bright murals running down the halls, butterfly-shaped wards, having the Easter bunny visit when I was an inpatient, and a box full of finger-puppets courtesy of the blood lab. I was still sick, but there was a very intentional way that my parents were involved, like extra chairs in hospital rooms for family to dish out opinions and help decide. The first time I was in the adult hospital my Mom cried. The hospital room was beige, had four beds, and was wholly adult while I still felt like I was trying to grow up.

When I was transitioning to adult care, I had a singular ‘transition appointment’ where I was supposed to magically become an adult (this, however, did not happen). It’s kind of like if you want to get from point A to point B with a dozen eggs – you should probably keep them in the carton to transfer them, versus spilling them into the bag without protection and ending up at point B with a bag dripping with yolk.

That’s why it’s so exciting to be talking about Patient Activation. Just as the name suggests, the goal is to help patients and their parents become more active and engaged in their medical care. If you want to go to Spain and speak fluently, you need to do more than buy a dictionary – you need to practice.

Currently, the Patient Activation intervention is capitalizing on something patients are really great at – using their phones. Participants receive texts on a weekly basis with a question about their health status and when they text back, the answers are saved. And then all of their responses from the Inter-Visit Planner are aggregated and given to the participants and their doctors. What’s so cool about this is that participants and doctors are entering an appointment with things to talk about, which help everyone make better decisions about their medical care.

Another really interesting part of this intervention is the Patient Status Tracker, which helps translate medical language into accessible English. I can remember sitting in appointments when my doctors would talk to one another and I had no idea what they were saying, even though I was sure they were speaking English – medical lingo is hard to understand, especially when it comes to test results. The tracker gives participants an insight into their care through visualizations of test results and plain language.

Growing up is hard. All of a sudden it’s a lot to be responsible for, but when one of those responsibilities is medical care for a chronic illness, it’s all the more important to have the necessary skills and support. This way we can truly stand shoulder to shoulder with our doctors, hand in hand, to make the best decisions for ourselves and our diseases.

Jennie

Not Alone: A Guide for the Climb

Posted on 5 December 2012 by samisophia

As a kid, my favorite wintertime activity was sledding on this giant hill in front of my house. I remember dragging my little red sled up the hill through the heavy snow, occasionally giving up and looking to my dad to carry me the rest of the way. Coping with IBD can feel like an uphill climb too. Learning to live with a chronic illness can be scary and complicated, and it takes effort and energy. It can feel like taking a big step into the unknown with little feet, and the uncertainty can deter many patients and families from taking active roles on their care teams. I had so many questions after my diagnosis. What does this really mean? What will my life be like now? What do I do?

Living Well with IBD: A Self-Management Program endeavors to answer those questions and more. This handbook, accessible digitally and in print, aims to simplify an abundance of information that patients and families need to acquaint themselves with to become engaged and informed members of their care teams. Both formats are colorful, interactive, easy-to-read, and can be consulted whenever necessary.

There are sections that walk a patient and their family through understanding their diagnosis, various treatment options, common procedures, growth and nutrition information, available resources, and the importance of treatment adherence, and so much more. Each section clearly lays out each member of the care team’s responsibilities, emphasizing that smart management of IBD is a true team effort. Short-answer and multiple choice questions at the end of each section encourage patients to review the information and consider any questions or concerns. There is plenty of room for patients to write questions and to-do lists to help keep track of their responsibilities. Downloadable or tear-away forms are also available to assist young patients in managing their condition on a daily basis. The ultimate goal of the handbook is engaging patients and supporting successful self-management: encouraging young patients to take active roles in their care.

Most importantly, the handbook recognizes a truth I struggled to comprehend after my diagnosis: there is no cookie-cutter IBD patient. Every patient is different and every diagnosis is different, so the handbook has been made to be easily customizable for each particular patient and care team’s needs. Certain sections may be used frequently, whereas others may be used sparingly or temporarily skipped. The handbook’s greatest asset as a learning tool is its flexibility in either format – it is broad in scope, while narrow enough to relate to a specific patient’s journey. The handbook may be used as a tool during and/or in-between office visits, depending on a patient and provider’s needs.

Living Well with IBD: A Self-Management Program has been developed under the guidance of Wallace Crandall, MD at Nationwide Children’s Hospital in Columbus, Ohio. The printable PDF version is available for download on the ImproveCareNow website, and is printed for you at some participating ImproveCareNow centers. The digital interactive version is in the final stages of development.

As a patient, I recognize the importance of good self-management tools. They enhance patient education, activation, and treatment adherence. Any tool that simplifies the complexities of living as a young person with a chronic illness is welcome in my book, and Living Well with IBD: A Self-Management Program succeeds. Living as a child or teen with a chronic illness isn’t easy, but tools like this make the jump into self-management a bit less of a leap.

Emma: Your Waiting Room Ally

Posted on 3 December 2012 by samisophia

Today is the second day of Crohn’s and Colitis Awareness Week. Throughout the week, Jill, Jennie, and I will be taking turns profiling some ImproveCareNow innovations we are incredibly excited to share with the community. I have the honor of introducing Emma, a promising initiative out of Oklahoma University (OU) Children’s Hospital to bridge the gap between tech-savvy adolescent patients and their gastroenterologists.

Who is Emma? Emma is the main character in a captivating iPad game of the same name, developed by OU students in collaboration with Dr. John Grunow. The Emma iPad app is designed to engage young patients in the waiting room, educate them on how to better manage their IBD, and give clinicians a preview into their patients’ health and needs. Each session is customizable to a young patient’s diagnosis and history.

Put an iPad with the Emma app in the hands of a young patient; she’s a little bit anxious about her upcoming clinic visit, but is tech-savvy and somewhat disengaged in the waiting room. Emma transports her into a colorful, interactive four-realm world. It reads like a storybook at first, but soon launches into a variant on Angry Birds. The adventure begins in Port Vanguard, the portal to all four worlds. Soon, our patient is swiping her fingers across the touch screen, navigating Emma’s rocket ship through hazardous terrain and “boosting” it when it starts to fall. It’s familiar, it’s engaging, it’s competitive….and it’s educational!

Emma App Screen Shot Welcome to Port Vanguard

Screenshots from Emma app courtesy of Robert Free (co-developer)

As our patient plays, Emma slips in multiple choice questions that test her comprehension on topics like nutrition and self-management, questions customized to her diagnosis. Emma also asks the patient to rank her quality of life and emotional health. Emma sends our patient’s responses and a summary of specific target areas of patient education which need work to her gastroenterologist. Her GI can then tailor her subsequent visit to address gaps in her understanding of her diagnosis and specific areas of concern. Emma is all about streamlining the clinic visit to make effective use of everyone’s time. The app is currently being beta tested at OU Children’s Hospital, where a select group of patients are helping Emma reach her full potential before hitting ImproveCareNow centers nationwide.

Why do I think Emma is so brilliant? Emma is an effective and clever use of technology, which has been designed especially for a tech-savvy generation. Emma engages patients in the waiting room while giving physicians a quick pre-visit snapshot of their condition. She turns waiting room downtime into a productive use of patient energy (and maybe even jitters!) to better the patient-physician dynamic. I met Emma this past summer during a Patient Advisory Council beta test opportunity and was immediately impressed. As I transition into adult care, it’s exciting to watch technology improve the pediatric clinic environment I lovingly leave behind. Emma is innovating the clinical experience, starting right in the waiting room. That’s a real game-changer.