Pre-Visit Planning

Posted on 3 April 2013 by ImproveCareNow

Imagine being a patient who arrives at the clinic and can really sense that the providers are ready to meet your needs!

Imagine knowing that your whole care team sat down a week in advance to review your disease course over the last six months, track down any missing lab results, and troubleshoot with colleagues to figure out why it’s been so tough to keep your disease in remission. Imagine getting a call from the nurse a full week before clinic to ask what has been going on since your last visit and, as a result, the social worker is in clinic and ready to discuss solutions to the issues you are having at school. Imagine the lab having your orders well in advance so that the collection tube that they have to use, but don’t keep stocked, is ready and waiting. This time you don’t have to wait while they run down to the supply room, making you late for school and your parents late for work.

The automated pre-visit planning tools that ImproveCareNow centers are now able to use will help make scenarios just like these a reality. Providers will have detailed summary information about their patients available at their fingertips when they need it…before the visit. They will have a concise, printable tool that can be easily shared with the rest of the care team. Ideally, this tool will be used to guide conversations with parents and patients before they come to clinic so that they can be a part of planning their visit, not just passive participants in it.

The result will be more reliable, proactive and individualized pediatric IBD care.

[editor's note: submitted by Sarah Myers, MPH, RN | Lead Quality Improvement Consultant for the ImproveCareNow Network]

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.

Parental Guidance

Posted on 30 October 2012 by 2endibd

Having a child with IBD means many things. It means learning a new language, a new way of living, developing new family dynamics, gaining a new perspective, and seeking, desperately, to get guidance (and to give guidance). Also, it reinforces the notion, “You don’t know what you don’t know.” But, luckily at my child’s care center, and across the ImproveCareNow Network in which our care center is a participating member, guidance is available to parents and guidance is also sought from parents.

As I watch my child learn to live with Ulcerative Colitis, I learn too. So, not only does my parental guidance come from her medical team and other parents, it comes from my child as well. She guides me by letting me know I am being overprotective or questioning too much – how did you feel today? what was your level of stomach pain? how many times did you go to the bathroom? – and that sometimes it is best to just leave the UC inquisition for another day. When she is feeling good, she just wants to relish the moment and forget about UC. She guides me to live in the moment as she has learned to do and to appreciate the gift of now.

Parents as partners and teachers is important to a child’s medical team. Parental guidance is a must when communicating a child’s flare pattern as it is as unique as are our children. My daughter’s care team relies on me and my husband to guide them through her symptoms and health pattern so they can care for her better and deliver better outcomes. It cannot be “family-centered” care without the family participating as partners in a child’s care. Doctors cannot provide the best care for IBD kids without parental guidance.

As my child is a tween, my parental guidance to her during a medical visit is to model clear communications with her medical team. When my children were very young, I would always say before a doctor’s visit, “Doctors are like detectives, and we have to give them the clues to help them solve the mystery.” Teaching our children how to communicate with doctors is a necessity. With her teen years fast approaching and college around the corner (in my mind anyway), I must use my parental guidance to prepare my daughter for life-long medical care without me. I must model the behavior she needs to learn to do life with UC on her own, someday.

Even though my daughter is only a tween, her transition to being able to care for herself must begin now. While I want to be by her side through her IBD journey forever, the reality is I cannot do that. So I must not fail her by not preparing her or guiding her toward this kind of independence. We are very fortunate, our care center has a formal transition program from pediatric to adult GI care. It is just this type of guidance that I need to receive from them to do this right.

ImproveCareNow (ICN) made transitions a focus at their recent Learning Session in Chicago. Young adult patients, medical professionals and parents came together to bring their perspectives, provide their guidance for the many transitions children with IBD face and how to navigate them as smoothly as possible. Across the ICN Network, parental guidance is not only needed, it is valued. The ICN Parent Working Group (PWG) is proof of that – parents from ICN centers are coming together to guide one another and the ICN Network.

When a child is diagnosed with IBD, or any chronic disease, parental guidance is important. Why? Because family-centered care requires a circle of communication and guidance from all involved at different points on the journey. It is the needed model to resolve the issues and meet challenges of pediatric IBD. Without the many facets of “parental guidance”, our children will not live as well as they should with IBD. So not only is parental guidance important, I believe it is required.

Collective Wisdom to Improve Health and Health Care

Posted on 28 August 2012 by Peter Margolis

ImproveCareNow and the Collaborative Chronic Care Network (C3N) project

We all know the current system of chronic illness care isn’t working. It’s not working for kids with diseases like Crohn’s disease and ulcerative colitis; like Bianca (not her real name) that experience a lot of pain. But pain is the least of Bianca’s worries. Without optimal treatment, she’ll likely have stunted growth, possible arthritis, and a significant risk of surgery. And many normal childhood events like sleepovers or birthday parties….. a real stress.

The system is also not working for Dr. Sandy Roan (also not her real name), Bianca’s doctor. Dr. Roan has a variety of treatment options, but the “best evidence,” the evidence that results from randomized trials, can’t provide information on what will work best for a particular individual.

It’s also not working for Bianca’s mom, Anna, because the care delivery model doesn’t make it easy for her participate in Bianca’s care. She is wondering about trying diet modifications to see how best to control Bianca’s symptoms. She keeps an eye on what’s going on but feels the doctor’s role is to come up with solutions. She doesn’t really see the collaborative possibilities.

Finally, it’s not working for Dr. Vincent Kapoor (not a real name). He’s a researcher interested in improving IBD care but he’s faced with small unrepresentative data sets, and a lack of easy and productive ways to share data and increase the impact and reach of his research.

The Institute of Medicine’s “learning healthcare systems” model provides an exciting vision in which patients, clinicians and researchers work together to choose care based on best evidence; together they drive discovery as natural outgrowth of patient care; and ensure innovation, quality, safety and value, all in real-time. But so far, neither patients, nor doctors, nor researchers have easy access to such system.

Collective wisdom

What if we could harness the collective intelligence of patients, clinicians and researchers to create such a system? Think of Wikipedia, or, in science, how open, rapid sharing of data in advance of publication in the human genome project accelerated the sequencing years ahead of schedule. These are examples of how the production of knowledge, information, and know-how can be distributed over large groups of people. Yochai Benkler, of Harvard, calls this form of production network-based or “social” production.

http://www.ted.com/talks/yochai_benkler_on_the_new_open_source_economics.html

Network based production is suited to complex systems like health care, precisely because the necessary knowledge, skills and tools are often beyond the capacity of one place, one person, or one organization; because the stakeholders in the process, patients, clinicians and researchers, are motivated and have skills that can be devoted to the task; and finally because the scientific questions about how to accomplish improvements in health and health care, require a multidisciplinary complex systems science perspective.

With combined support from the NIH transformative research program, a US Agency for Health Care Research and Quality Enhanced Registries grant and 38 ImproveCareNow Network care centers; a team of patients, families, clinicians and researchers are working together to create what we call a collaborative chronic care network or C3N. A C3N is a network-based production system for health and health care.

Does this sound like an outlandish idea? It’s not; it’s actually already taking place. In the ImproveCareNow Network pediatric gastroenterologists are working together to share their collective wisdom and know-how to continuously improve the care and outcomes of children and adolescents with Crohn’s disease and ulcerative colitis. The percent of patients in remission has risen and been sustained without the introduction of new medications.

How did ImproveCareNow do it? SHARING – sharing data, sharing knowledge, sharing know-how, and sharing work. Every ImproveCareNow center pools their data, compares outcomes, standardizes care and learns from one another about how to get better results. An article in this month’s New Yorker, by Atul Gawande describes how standardizing and making care more reliable can make medicine more effective and lower cost. http://www.newyorker.com/reporting/2012/08/13/120813fa_fact_gawande

The C3N project is collaborating with the ImproveCareNow Network to take our work to the next level; redesigning an existing clinician-centric network into one that involves everyone – patients, families, clinicians and researchers.

How do you create a network based production system for health and health care? In my next post, I’ll write about the three ways in which patients, families, clinicians and researchers are co-designing this new system.

In the meantime, you can learn more about the ImproveCareNow Network at https://improvecarenow.org; the C3N Project at https://c3nproject.org, and listen to the talk delivered at the Patient-Centered Outcomes Research Institute, which forms the basis for this post: http://youtu.be/FxYbSEXWzhU

A sweet review

Aside

In his recent post – Vermont Children’s Hits the “Sweet Spot” for Quality Medical Care – on Fletcher Allen’s Health Care Blog, Nathaniel White had this to say:

“It is my belief that the “sweet spot” for quality medical care lies somewhere between the laboratory and the bedside. Those truly talented healthcare providers are those who are able to blend the ever-evolving science of medicine with the art of taking care of patients.”

Nathaniel White is a medical assistant in Pediatric Gastroenterology at the Vermont Children’s Hospital at Fletcher Allen – one of 36 participating ImproveCareNow centers.