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.]

Jennie’s Shield

Posted on 20 March 2013 by ImproveCareNow

[Editor's Note: IBD is definitely not always guts AND glory...sometimes it's just guts...and as Jennie puts it - disobedient guts. Staying positive and empowering others to do the same is important to Jennie, but she recognizes that it's also important to stay real. And it is a very real challenge to live with a chronic illness each and every day - physically and psychologically. Read Jennie's musings about her most recent Gutsy Generation post, titled The Shield.]

My blog posts usually focus on living well and living large with IBD – my goal is to always portray a 21-year-old finding her way in life with disobedient guts. Someone once told me that they admired my ability to be vulnerable, which at the time I was mortified by this comment. Vulnerable? What an insult! I thought. But now I think it is one of the nicest compliments I have ever received.

Why the change in attitude? Being vulnerable and exposing your scars – literally or metaphorically – shows that no one is perfect, everyone struggles, life is hard and it’s about getting through and getting up. Every individual at one time or another will face anxious moments, sad moments, frustrating moments, and the like – it’s normal and in so many ways it’s what it means to be human. This is all the more important in pediatric chronic illness, when children with healthy psychology are confronted with incredible physical and emotional trauma. It’s like buying a map to get to a different city but having the car break down on the way – it’s critical to support mental health alongside physical health in flares and remission.

It’s not that it’s ‘all in your head’ by any stretch of the imagination, it’s that it’s impossible to tease apart psychological health from physical health – anyone who is nervous feels butterflies in their belly. The psychosocial issues of IBD warrant discussion and reflection and not just from the ‘outside in’ (i.e., doctors and researchers), but from the inside out, where patients can stand up and say – without shame or embarrassment – that they’re struggling and need help. This is a way we can truly improve care now.

C3N for CF

Posted on 14 February 2013 by ImproveCareNow

[Editor's Note: Erin Moore is "Doin' it for Drew"! Drew has Cystic Fibrosis (CF). CF is a life shortening genetic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). It is a chronic illness - meaning until a cure is found, CF is forever. Erin is collaborating with the C3N Project; exploring the creation of a Collaborative Chronic Care Network for CF. This post was originally featured on Erin's blog - 66 roses.]

I arrive for our clinic appointment around 7:45am. The last time we were here was 3 months ago. Usually, we are ushered back to a room within 15 minutes of arrival. A nurse greets us shortly thereafter to review our medicine list and address any issues that we’ve been having. Just the other day he was coughing up a storm but seems to have gotten over it. Should I talk to the dietician about his diet again? His weight is up and his stools seem “normal” but I’m always anxious about his lack of interest in food. I wonder if an RT is available to talk a little bit about his airway clearance. I don’t want to be a bother but I sure do think the airway clearance he had in the hospital this summer was more effective. I wish I knew what they were doing differently!

Next up is the doctor. She asks how things have been going. Today? Great! Last week? I was a little worried, but the cough he had seemed to go away. There was that one day that his stool was a little weird but that got better too, not sure what caused it. And frankly I can’t remember back farther than that. She checks him out and wants to review his labs since we are at his anniversary visit. His vitamin D is low, his breathing still sounds a little noisy, and a note that she has from his ENT seems to indicate that he may need another sinus surgery. She feels out whether I’d be open to a bronchoscopy at the same time. Maybe another CT is a better option. When I talked to the ENT last month it sounded like things were going well? I guess I don’t mind if they do a bronchoscopy while he’s under for something else, but I remember huge discussion with other CF parents on Facebook about CT scans and all the negative effects of radiation and I don’t know that I want to do that? I wish I could find that conversation! I ask questions about a game plan for if he needs IV antibiotics if we grow pseudomonas again, having read online about all different methods used for eradication but not knowing which is best and why. It’s hypothetical at the moment because they haven’t even swabbed him yet. I just have sort of a busy life and sometimes having a plan provides a sense of comfort for me. She suggests an action plan and I am mostly on board, except for the azithromycin because I saw a presentation somewhere that seemed to show compelling evidence against its use. I wish I could find that presentation to show her! I trust his doctor and want to follow her recommendations, but I have some reservations. I don’t think either of us has time to get into this as I’ve already taken up more than my fair share of appointment time. We agree to wait for the results of the culture to decide a course of action.

Next up is the dietician. Lucky for me, he has a “weird poop” while we are there so she can look at it and provide her thoughts. This isn’t what all of his stool looks like. I don’t really know how often his stool looks like this – sometimes once a day, sometimes 4 times a day, sometimes once a week. We talk for a bit about enzyme dosing and the calories he’s taking in, her offering suggestions for beefing up his intake and me adding them to the “notes” section in my iPhone, hoping I can get them down elsewhere before one of my kids deletes them by accident.

The social worker pops in to address some questions about starting preschool that I had mentioned to the nurse 2 hours ago. I had met with the Psychologist about a year ago to talk about his lack of interest in food, but never followed up, mostly because of both time constraints and cost. If only she could pop in and give me a couple of quick suggestions. But I have to go, we’ve already been here for almost 4 hours. While waiting for my discharge paperwork, a research assistant shows up to see if I’d be interested in participating in a study about I’m not sure what because my 3yr old is clambering to get out of that office. I agree anyway, get my discharge paperwork and fly out the door.

This summer, we were visiting family in Philadelphia and my son got sick. He was admitted to Children’s Hospital of Philadelphia for a pulmonary exacerbation. Not a single morsel of information about him and his history with Cystic Fibrosis was available to the doctors at CHOP. Many phone calls were made between fellows from my personal cell phone to understand his medical history and doctors asked me the same questions day after day before we trusted and understood each other and hashed out what was going on in the days leading to our admission. I know that it was in Drew’s best interest that we discuss everything about him ad nauseum, but it blew my mind that in this age of technology, there was no electronic medical health record that the doctors in Philadelphia could access to understand Drew to provide the best care for him quickly.

When Drew was a baby, we kept a diary of his formula intake and the corresponding output. We set up a nice little Excel chart and shared that with our dietician on a very regular basis. I credit that chart for his gained weight and reaching the 50th percentile by the time he was 6 months old and he has been able to maintain that to today when he is almost 3. I know that all patients aren’t equal, but wouldn’t it be great if that data, if our “patient reported outcomes” were cataloged somewhere so that we could share what we did and how it worked for us? Sure, I could take to the CF Mom’s Facebook page and ask about what high calorie snacks work for their 3 year olds and hope that some of those moms are online and eager to provide some feedback. But once that question is asked and answered, it just simply vanishes into cyberspace. I cannot tell you how many times I’ve said, “I know I’ve seen that somewhere”. Image the power of cataloging that data, those conversations, those findings. It can be used by patients, by doctors, by researchers and teachers. Just thinking about the power of that is what is driving me to stay involved and insist on nothing less.

I think you’re seeing my point, a point that was brought out in almost every session I sat through at the NACFC this year. The information that we currently have on patients in between visits is limited. Filling those gaps would give us a more complete picture of health. It would help doctors to intervene at appropriate times, times when patients might not call because in their mind “its just not that bad yet”, but doctors are able to identify a problem or a pattern that lets them know the direction something that’s “not that bad” is headed. They would be able to more easily determine if certain therapies were actually making a difference through the combine use of passive behavioral and active patient reported data, looking at a real-time view of what is going on with a patient, not what they remember to tell you when they are in clinic. The registry could be enhanced by identifying day to day trends and commonalities in patients sharing mutations. And all of this data can be used by researchers and scientists to figure out every last detail this disease and find therapies that work for every one of us. From a parent’s perspective, the C3N is what we need to make life easier and improve outcomes while we wait for our cure.

Population Management Drives Improvement at University of Michigan

Posted on 18 October 2012 by ImproveCareNow

The ImproveCareNow Quality Improvement (QI) Team at the University of Michigan has been working very hard at improving their QI processes. They now have had a long trend of improving remission rates from one population management report (PMR) to the next. But like any good researcher, they had to ask themselves: is this a real improvement in disease status for our patients, or an artifact of better data?

Physician Leader Dr. Jeremy Adler thought that major contributors to improved remission rates over the past year include: 1) improved processes with more complete data collection, 2) educating clinicians who misunderstood the methodology and consistently misclassified visits, and 3) new and improved PMR process, in that order.

Dr. Adler’s team began digging through their data, and leaned a few things. In the interest of helping others in the ImproveCareNow Network – which is what collaborative medicine is all about - the Michigan team shared what they learned from analyzing their data.

Here is what the Michigan Team learned – in Dr. Adler’s words:

1. We are still collecting data on paper forms (we just went live with EPIC). We had a high rate of visits with missed data capture. So many of the data points were old. We made many attempts to improve return rates of data forms, which eventually improved our data collection rates. We also have had several changes in our forms designed to help highlight questions that were frequently missed.

So I went through our pre-visit planning (PVP) forms to manually calculate remission rates from the column “PGA Remission Status” (# patients in remission / # total patients). I then went through Excel to exclude the data points where the data were >200 days old.

On the enclosed graph, the red line represents the original remission rate from the PMR. The blue line represents remission rates with data >200 days old excluded. I was surprised to see that there is very little difference. I suspect that this means that when we miss data collection, we miss it for everyone, not just sick patients.

2. I then learned that a provider had a misunderstanding of the Physician Global Assessment (PGA), and was routinely classifying based on overall disease course, rather than disease activity at the time of the visit. I then went into excel to exclude all the data from that provider (green line). Again the remission rates did not change substantially.

3. This leads me to believe that our improvement in remission rates may be true improvements in disease status. The improvement in remission rates starting in April-May coincides with when we began routinely having population management meetings, and routinely acting on our findings.