I had a great day on Friday. It was our monthly QI meeting with the CF team. I was finally able to get enough people on board with the idea of bringing the C3N to CF that they scheduled a meeting to talk about it right before our PIQI meeting, maybe because they realize that I'm on to something, or maybe just to shut me up. There is now a project charter in place for the C3N for CF with dates and specific activities to be completed and people to complete them. We have a meeting scheduled in late January with some high level CF Foundation folks to try to get them on board with our idea so that everyone can utilize it. I am so pumped about this you have no idea. I think that the C3N is going to revolutionize care for CF.
So the thing we've been working on as a quality improvement project is coming along nicely. I don't recall how much I've talked about the project on here before so I'll give a quick overview. A group of parents got together with the CF clinicians to discuss their perfect CF world - what can we change, what can we improve, what can we do to make your lives better. After dozens of ideas were thrown around, we came upon an idea. So every Thursday, our doctors and nurses and other caregivers get together for what is called a Chart Conference, where they discuss the patients who will be in the following week and make decisions on who they need to see. As patients, we thought that our input would be beneficial for several reasons. First, it would give our caregivers an idea of what's been going on with us since our last visit. It would also make them aware of questions or concerns that we have before we are in clinic, thus saving some time in addressing our issues when we are in clinic for our already overly long visit. So the PIQI team (Parent Involvement in Quality Improvement) has been working on a Pre-Clinic Survey that will be sent to patients about two weeks before their visit, allowing them to let the team know what their priority or main concern is for the upcoming visit and then choose who they are interested in seeing when they come in for their visit and tell us why. The CF team will take this information from the patient into their Chart Conference and use patients input and their best judgement to plan a patients visit. The idea is to empower the patient and streamline the visit. I'm on board.
So as we are planning all of this out, I couldn't help but think to myself, "Couldn't we use the C3N to do this?" but it seemed like most of the team wasn't ready to swallow something of that scope, so we stuck with our plan and we are working to implement it. We are using a secure messaging system that CCHMC has called MyChart, which is fine. There is an app for my phone that dings when I have test results or a message from one of Drew's caregivers. It does what its supposed to do. We are working on a post-visit survey to assess what people think of it and gauge its effectiveness. We have only tested it with a few people, but it seems to be generally accepted. People like feeling empowered, especially in a chronic disease where there is so much to deal with that you have so little control over.
As it stands, I am currently the parent involvement in the PIQI. There were a few others that had show some interest but haven't been to more than one meeting. I get that people are busy and whatever, but my perspective on involvement is that the more I can do, the more I can be heard, the more I can influence change, the better. It is Drew's life that we are talking about. If I do not stand up for him and advocate for him and improve practices and whatever else I can, who will? Decisions will be made without patient advice and consent. And why? Because we all assume that someone else will do it. I'm gonna do to.
Anyway, as we were talking in this meeting, I asked the 3 doctors and several nurses and other clinicians what their main objective was in getting this feedback from the patients and they said that it was to understand what is going on with patients between visits. They plan their clinic visits based on what they know from the previous visit and whatever phone calls or conversations that they've had with the patient between visits. I get it! They can do more, help us better, if they have the whole picture. But the survey that we are sending them is being filled out by patients or parents just before a clinic visit. People may not remember what has been going on for the past 3 months, or might tell you that they don't want to see anyone but the doctor while they are in, when the reality is that they've lost their job and don't have benefits anymore or broke their nebulizer and should be seeing a respiratory therapist or any number of other things.
So I say, "What about using Ginger.io?". They use behavioral data and surveys to create data points and provide insights into what goes on between visits. What if we get a better understanding of how we can use this to get exactly what we're looking for? I don't know all the details, but I suspect that you can personalize survey questions that you ask folks - how have you been feeling? are you experiencing and increased cough? have you been able to take all of your medications? All of this, plus the behavioral data, would give the clinicians the perfect view of what is going on between visits, real time. We could, in essence, predict a pulmonary exacerbation and treat it before it gets out of hand. And then, for the very first time in my mentioning of the C3N or Ginger.io, they paused and asked some questions and seemed truly intrigued. We're getting there!! I want to talk more with Ginger.io about how it all works and what I need to say next to sell this in. And then I'd like them to hire me. Ginger.io, not CCHMC. Though I'd take either. Overall the afternoon went well. Its invigorating to sit through these meetings, making decisions that matter in improving outcomes for people with CF.
I got Ella from school and came home. Everyone was in good spirits, mostly happily playing and getting along. Then around 5:30 the kids were playing with an empty box in the dining room and Drew slipped and fell and he caught himself with his face on a dining room chair. When he stood up, screaming, he was missing a tooth. Upon further inspection, it had not been knocked out, but jammed all the way up into his gums. Additionally, he split his lip pretty good. So back to CCHMC we went! They gave me the option to leave the tooth as is and risk possible infection or nerve damage, or pull the tooth. My poor boy! It was so bad that we decided to have it pulled, which turned out to be the right decision because there was so little actual pulling involved. Once the dentist grabbed the tooth, she barely had to tug at it before it came out. She said that it wasn't even attached, that he had done all the dirty work himself, she just got it out. His adult teeth won't come in until he's probably 7 or 8, so we shall remain down one front tooth for something in the neighborhood of the next 5 years. It's just a tooth.
So that was my day yesterday! I was invited to participate in a Transition project with the CF team so I'll be back at Children't next Tuesday for that. I really do love being able to provide my real life experiences to them as they work to improve our lives. Hopefully I can get the scoop from Ginger.io next Wednesday when I talk to them about their job opportunities. I deserve a cut if I get the CF clinic on board before I even work for them (assuming I will someday soon work for them in some capacity). Just sayin'.