I believe that there needs to be a defined difference between improving an existing process and creating a new one. Right now, much focus seems to be trying and often trying again to fix things that aren't working right - adherence reminders, transition projects, finding ways to ensure that patients don't feel isolated in this disease. Perhaps rather than just trying to change something that isn't working, we need to change the way we think about it and try something new.
The C3N for CF is a novel approach to healthcare. It changes the traditional doctor-patient relationship. The clinical staff are where they are because they chose to be. Patients don't choose their disease. It is something that happens to them and something that they have little control over. Patients want access to and control of their information because they want to be engaged and empowered regarding their care. Doctors should support this.
In order to overcome the current barriers, we need to identify the current barriers. In my opinion, clinicians seem puzzled as to why patients don't seem to want to engage in their own care and improving outcomes, but how many clinicians or just regular people do you know who would be agreeable to regularly and reliably engaging in something that you don't like having, don't like doing, and don't want to spend any more time on than you already have to. We can't just assume that if we build it, they will come. We have to understand and engage patients as active participants in their disease management in a way that alleviates the burden already weighing heavily on them. I believe that the proposed interventions for the C3N for CF will do just that.
I've rewritten my story to reflect how I see the C3N changing things for the CF community. This may perhaps be an aspirational vision, but I don't think its unreasonable to expect to see these interventions causing a shift in the way people both think about and manage their disease.
Its been 3 months since our last check in with the clinic. We've been tracking our data for the past 6 months and are interested to hear what, if any, trends they are seeing. Last week we got a summary of our data to review before our visit that helps us to identify any ongoing concerns that I've had since we were last seen. Our doctor has already reviewed this and is recommending that we meet with our RT to discuss alternative airway clearance techniques because she has seen that we have been checking that out on our message boards. Since she brought that up, I do agree that it could be useful to hear about some of our other options even though I haven't really thought about much about it since our last clinic visit. I also notice that Drew's interest in eating has declined considerably over the past 2 weeks. I let them know that I'd like to talk with the dietician to figure out what's going on. Drew's vitals (PFTs, O2, heart rate, blood pressure, etc), that we record with apps recommended by our clinic, have remained steady since our last visit. After returning our pre-clinic survey, our doctors review us along with the other patients scheduled to be seen during the upcoming week. We are given a green light by the clinical team and we decide together that we don't need to go into clinic for our appointment. I'm relieved because I would hate to pick something up when we're doing so well, and I wasn't sure if I was even going to be able to make it since my husband will be out of town for work and I haven't been able to find a babysitter.
During our appointment time, we meet via web conference. At the beginning of the call, the clinicians see that I have updated our medication list just prior to the appointment so we can skip that. They've also seen that we've been taking our prescribed medications pretty reliably and commend us for following the doctors orders. We look together at his behavioral data that we have been tracking and they point out that something is going on Tuesday and Thursdays. Per behavioral patterns and some survey responses from those days, he seems to have headaches and just doesn't feel great. After a few moments of conversation about what could be going on, we are able to identify that those are the days that he is in school and may not be getting as much to drink as he needs. We agree to try to keep him better hydrated at school and will continue to look at what happens.
The dietician and I talk for a few moments about his eating behaviors and she suggests that it may not be an appetite issue but rather a control issue. This is apparently common in preschoolers, and she asks the psychologist to hop on the call for a few minutes. The psychologist suggest a few techniques to try at mealtime and we make an appointment to check back in two weeks. Before she jumps off the call, I get a notification of our appointment through MyChart which I can easily add to my calendar. This is SO much easier than trying to talk to appointment scheduling before we leave or remembering to call them once we get home.
Our nurse hops on at the end to wrap up our appointment. She provides a document with some of the most common things parents of 3 year olds are discussing on our message boards. We can already swallow enzymes and don't ever have to much resistance getting him to do his treatments, but I had no idea that lizards and other reptiles carry pseudomonas! I wonder what else I don't know. I should check them out more often! She reminds us to drop our culture off at the lab and asks if we need any medication refills. We agree to continue doing what we're doing and will check back again in 3 months.
This summer, we were visiting family in Pennsylvania and my son got sick. He was admitted to the Children's Hospital there for a pulmonary exacerbation. I gave the doctors there access to his online personal health record, which includes all of the information from the team at our hospital as well as my own notes, behavioral data trends and conversations I've had with my clinicians about survey results and other. The doctors there were used to this because their patients also have this personal health record. After a phone call to my son’s doctor at our hospital, we understood what was going on in the days leading to our admission and had established a plan for treating the exacerbation. It felt good to know that there was an electronic medical health record that doctors everywhere were familiar with and could access to understand my son to provide the best care for him quickly.
It is a relief that Drew hasn't been seen in 3+ months and he is healthy. This new system is allowing me to really keep on top of how Drew is doing in an effortless way. I get insights into his behavior, health tips from a trusted source and I really feel more connected to the clinical team. I feel very in control and things seem to be going very well, so I'm happy to continue down this path if we will continue to see these kind of results.
I'll let you know what the Foundation thinks when they hear it in just a couple of weeks!