A Collaborative Chronic Care Network (C3N) for Cystic Fibrosis

What is a Collaborative Chronic Care Network? I asked the same question about two years ago when I first heard the term mentioned. In short, it's a platform for bringing together patients, clinicians and researchers to work together to create better ways to manage health and care. We all have knowledge and expertise, and by working together we can understand the tools and systems needed to improve outcomes and save lives. We're creating a C3N for Cystic Fibrosis. Get excited people!

Last week, we had the opportunity to introduce the C3N work that we are doing at Cincinnati Children's to some influential members to the CF Community. We had, I think, 19 people on the call and got nothing but positive feedback. The questions that were asked ranged from how we engage others to participate to how this project will be funded. We discussed data privacy, research, and a few of the specific interventions that have been created and tested in other chronic conditions and how they have transformed care. We did have a few technical difficulties and weren't able to have as much of the open conversation as we had hoped too, but questions that were typed in and feedback that we received after the call seemed to indicate that we generated a fair amount of interest and excitement as well as a desire from some to collaborate and get these tools out for use by patients. I was very pleased with the way that the call went and would love to be able to continue these conversations.

Now I want to share it with you! Again, we had some technical difficulties during the presentation and it would seem that because of the way it was recorded, you may need to go through the GoTo meeting link and register to view the recording. The GTM link is: https://www1.gotomeeting.com/register/352665816 After entering in an e-mail address, you should be prompted the option to download the GTM codec. PC Users may first need to install the GoToMeeting codec.

If you're at all interested in this super cool work that we're doing, watch the webinar and then take a look at the questions below. We've tried to address any currently outstanding questions from the webinar below, but know that there are always new questions and ideas and I'd love to help address any that come up. And even more than that, I'd love to hear what you think about all of this! This is going to change the way we manage our health in CF and I couldn't be more delighted to be a part of it!

How well does a C3N work with more passive individuals who don't have great advocacy skills?

Within the scope of the C3N project, there is a role for everyone. There are people who will simply be aware of the project. They will be aware that there are tools at their disposal, that their doctors and nurses are using to manage different aspects of CF health and care. There are people who will participate, who will ask questions, be a part of a pilot, read our blog and follow us on Twitter. There are people who will be contributors. They will give us feedback, join a QI team at their CF Care center, post to the blog. And finally there are people who will be owners, who will lead teams and run QI projects, create tools and organize events. Our goal is to make everyone aware. It would be nice to have 90% of the community participate. A very smaller percentage of people will contribute, and we would be happy if 1% actually take ownership roles. It’s important to remember that this framework is for the C3N project, not for the implementation of different interventions into the CF community. We are using this platform to test and organize new ways for doctors, patients and researchers to transform care. Once we can validate the usefulness of different tools, we hope to work with the CF Foundation on implementation. If you consider things like a quarterly visits for example, they were something that was researched and deemed valuable and the CF Foundation helped to implement it across its centers as a standard of care. Everyone will get to benefit from the outcomes of work that the active and engaged contributors and owners produce.

Have you begun the creation of a C3N for CF? What are the first steps? What do you need from us? How do we see it to fruition?

Cincinnati Children’s has already started work on the creation of a C3N for Cystic Fibrosis. The hospital has provided some funding to begin work on a few interventions over the next year, and we have also received some other grant money for the work that we are doing. The best way to get funding is to raise awareness and to show the value. We are working with the CF Foundation to show how using the C3N platform can change the way that we manage a complex chronic disease like cystic fibrosis. Even though several of these interventions are in pilot phase in Cincinnati we still need broad collaboration from all stakeholders to create a system that will be useful and beneficial to everyone.

Is Ginger.io app available to general users now?

Yes and no. Ginger.io is currently being used in the Diabetes community and is being tested out on patients with Crohns and Colitis. Within the scope of the C3N Project for the IBD community, Cincinnati Children's and Ginger.io are hoping to map the “behavioral genome” of a patient living with IBD. Ginger.io is not yet being used with CF Patients. For the cystic fibrosis community, we imagine using Ginger.io as a way for clinicians to monitor patients between visits and for patients to gain insights into behavioral patters that could affect their health. By creating an automated system that outlines the “norm” for a given patient, both the patient and their clinicians can be alerted when they fall outside of that range. Using a tool like this in collaboration with some of the data that I had shared through PersonalExperiments, we can dig deeper into what is going on before it becomes a big problem. You can learn more about Ginger.io on their website atwww.ginger.io or by watching this 60 second video that does a great job of explaining how they work http://seanduran.com/clients/gingerio/Gingerio_1080p_v4.mp4

How do you plan to initiate and facilitate conversations within the platform (peer to peer, peer to provider, peer to researcher, provider to research, provider to provider) and how will all of those conversations be cataloged? Will they be accessible and open to everyone?

We are still testing the peer to peer communication platform on a small scale, but the idea is that this will be a forum in which conversations are discoverable (by hash tags and other search methods) and available to everyone in the community. Part of the idea is to spark the conversations, but another big part is curating these conversations so that they are useful to people who come after.

What about privacy issues, how is the data protected? If you are collecting all of this data from various stakeholders, is there an opportunity to analyze that data?

Privacy and data ownership are important issues. We start with the principle that patients/parents own their data and should be the ones to decide what their data are used for. Many patients/parents want their data shared more broadly, especially in a de-identified format. We are working closely with key stakeholders to craft policies that balance privacy and sharing.

Again, please do not hesitate to contact us if you have other questions to ask, ideas to share, or are just simply wondering what's going on! You can email us at C3NCF@CCHMC.ORG, visit us on Twitter @CF_BigIdea or on Facebook at The C3N Project

We're having a party

I hope that my last post wasn't perceived as a complaint. While there may have been the undertone of "get me out of this hell", I do love this crazy life. I could do without the CF and all of the whining and fighting, but I bet that one day, sooner than I'd like, the neediness will be gone and I will long for it. And not all days are like the day I described. We are busy, no doubt, but I do find time to do some things that I really enjoy. I've been taking a lot of pictures again lately and that makes me happy. I've also had the opportunity to set aside some time to do more work with Cincinnati Children's Hospital on the C3N Project that we're creating for Cystic Fibrosis. We have a webinar on Wednesday to introduce it to some influential members of the CF community and I'm both anxious and excited.

It's an amazing thing that we're working on, but it's a hard concept to wrap your head around. We've sought out people who are already very engaged in their health and care at a number of different levels, people who would naturally fit into this new model of health management. I just hope we don't overwhelm or scare people away by the novelty of the idea. It's understandable though, when we say we're going to change the way people manage health and care and are shifting the culture to be one of active participation by all parties - doctors, patients, researchers - for people to think to themselves that it's a cool idea but we haven't a chance of actually doing it. But we do my friends. I do believe that we can, and the CFF believes that we can, and it's happening, starting on Wednesday!

I had a really great call this weekend with the other e-patients that I'll be sharing the stage with at Stanford MedX in two weeks. We had the chance to get to know each other a little bit and talked a little about what being a "patient" in 2013 means, how does the role of social media affect that, how did we become empowered and how do we empower others. I've gotta say that i'm most excited about the questions from the audience and from Twitter. I've never been on stage in front of a lot of people, and I'm a little nervous that I don't actually know anyone else that will be there, except virtually through Twitter, but I'm comfortable with what I know and what I do and I'm confident in my thoughts and beliefs about health and care. I think this conference is going to be amazing and I'm very much looking forward to it. I'll be tweeting at the conference (I'm @ekeeleymoore) or if you just wanted to hear all of the amazing people tweeting about the conference, you can follow hashtag #medX. The other folks I'll be talking with are Chris Snyder @iam_spartacus,  Emily Bradley @chroniccurve ,  Jody Schoger @jodyms  and Joe Riffe @dirtemedic. These are empowered patients with valuable perspective to provide, you should check them out!

Schools gotten off to a pretty good start for Drew. I've been overly impressed with the engagement of the school - calling me at snack time to find out how many enzymes he should have for a given snack, wanting to know if he can have different things to drink when I don't pack him a drink, and even a call from the teacher to tell me she has a bit of a cold and asking me how we should handle it. When I asked if she could just be diligent about keeping his hands clean and as much as possibly keeping a little physical distance until she was better, and that we would hope for the best, she responded with "Whatever it takes, we are in this together.' I almost cried. It's so comforting to know that we made the right choice. 

Despite his colonization with achromobacter, he's really been doing well lately (knock on wood). We were able to get his weight up and he's now in the 71st percentile for BMI (the goal in CF is usually to be above 50th). He's not a great eater but he will drink PediSure  morning, noon and night, and that in combination with the little that he does eat has him doing alright. He's wise beyond his years, and a little gentleman already, holding doors and always saying please and thank you. I hate that he has to have CF, but he's doing alright.

If you live under a rock and haven't heard about our Oktoberfest: Drinking for Drew fundraiser coming up on Sept. 21, you're invited. Everyone is invited. We have live music, tons of food, delicious beers, kids activities, vendors and a silent auction. You should come, and bring some friends. It's $40 per family or $25 for an individual. It's gonna be awesome!! (Click here to RSVP)

I admit it, I'm tired

I've gotta be honest, i'm exhausted. This whole back to school thing is kicking my butt. It's not just the back to school, it's also the extra hour and a half of treatments that we now need to find time for in a day, and the swim lessons, and the dance lessons, and our upcoming fundrasier (which will be awesome). This is how yesterday went:
Alarm goes off at 6:45. I know that's not early for many people, but the Moore family rarely sees the 7am sun. We didn't get out of bed before 8am but a few times all summer. Now school starts at 7:45. So the alarm goes off and I go to wake my daughter for school. We are dressed and downstairs by 7. I simultaneously make her breakfast, make myself coffee, and pack her lunch. By 7:30, my husband is downstairs, as are the other 3 kids who all want food, drinks, and a different cartoon on TV. I spend about 30 minutes pacifying that bunch while #1 heads off to school with dad. By 8am, I start to get Drews medications ready, checking the calendar to make sure I'm not giving the Tuesday-Thursday-Saturday pill on a Monday, Wednesday or Friday. The liquid antibiotic that he's on for inflammation, not antibiotic properties, is only given on Monday-Wednesday-Friday, but while a small bottle yields a little more than 12ml, it's only good for 7 days after mixing, and at 3.6mls three times per week, I need to try to recall when this bottle was mixed as there seems to be enough left for another dose, but it might not be good anymore. I dispense all other meds and assemble nebs, mixing up our inhaled antibiotic that literally smells like cat urine. It goes in a different kind of neb cup, but when Drew sees it he  freaks because 1) a mediction that smells like cat urine is misted into a mask strapped to his face and he knows how awful it smells, and 2) he knows that when he sees that neb, he has to sit for twice as long as a regular treatment beause it takes nearly 30 min to nebulize that medication. So I mix the medicine, hide the neb, and tell him its time to start treatments. It's now close to 8:30. This is problematic for a couple of reasons. First, this treatment will last around an hour. He is supposed to get the inhaled antibiotic 3x a day, spaced every 8 hours. There aren't enough hours spent awake for him to accomplish this, so we settle on trying to evenly space them. The other problem is that swim lessons start at 10am, which means that between the time we finish at 9:30 and 9:45 when we need to leave, I need to get two 3yr olds into swim suits and shoes, find towels, buckle in three kids, grab something to entertain the baby, and back out of the driveway so that we arrive with enough time to use the restooms before getting into the pool. It may seem silly that we do swim lessons...or dance class...or tball, what with everything else we have going on, but staying active plays a big role in staying healthy with Cystic Fibrosis. And while there may be no scientific proof to this, since we started swimming, the severe sinus disease has all but disappeared. I wouldnt want to be the guy swimming next to my little man, cleansing those funked up sinuses, but if a little chlorine can do the trick and keep us from another sinus surgery, then we will be efficient with that 15 min window that we have to get our act together. Move it or lose it people.
Swim lessons are only 30min long, thank God, because we need to get home to eat an early lunch because, you guessed it, we have another treatment to squeeze in before we leave for school at 12:15. Three year olds move at warp speed in almost all areas of their life, except for changing out of a wet swimsuit. This is also when the independance that I pushed them so hard toward comes back to bite me - they do not need my help, they can do it themselves. I try to be patient and watch and wait but we're on a tight schedule and FOR THE LOVE OF GOD why is it taking you so long to put on underwear!?! Focus people!
We manage to eat a quick lunch and get in a treatment before its time to buckle everyone in, again. Drop off is at 12:30 and we are all ready for it. Now its just the baby and I, with a quick stop at the post office to make before heading home. I imagined the post office to be quick and easy with just 1 kid in tow. I have a wild imagination. If I could send a package via carrier pigeon from my back porch, I'd buy a damn pigeon.
We're home before 1 and we're both ready for a nap. He gets one, I get to do the dishes, the laundry, the prescription reordering, the insurance claim negotiting, the [brief] treadmill walking, the dinner making and then the baby waking because at 3pm we need to pick up #1 from kindergarten. Back into the car we go at 2:45 and head off to school. #1 is tired but happy to see us and have some mostly uninterrupted attention while we wait for 2 & 3 to get done preschool.
At approximately 3:30 pm the fighting commences - because it really does matter who gets to the car first, who gets buckeled first, who had the best day, who made the first song request, who asked to go the back way home, and who isn't being treated fairly, by me, on our 5 minute drive home.
After we get in the front door and clothes are changed and drinks are distributed, there is a consensus to go outside to play. It's really not fun at all, by anyones standards. Exhaustion, in my house, shines through in the form of fighting, whining and crying. We remain outside until dad drives up, home early so that I don't pull out all of my hair. I warm up the dinner that I made earlier in the day, everyone complains that they don't like it, and I decide I'm not making anything else. Aftter all, if they starve to death there will be fewer mouths to feed!
At 6:30, its time to start the third and final treatment of the day. The kid are filthy, so we divide and conquer, one of us mixing and organizing medicines and devices, the other dealing with tired, dirty kids. The whole evening comes to a close shortly before 8pm when teeth have been brushed and stories have been read and four little people who I love more than anything in the world are ready for sleep.
We spend the next hour cleaning up our house. If someone had come to rob us, they would swear our house had already been hit. Baskets of clothes emptied to be used as cages, food and drinks scattered about, "artwork" taped to any and all open wall space. By 9pm, life seems to be in order. I want a drink, and I'd have one but being anything less than 100% the next day leaves me at an even greater disadantage than I'm already at. And lets be honest, I need more than just A drink. For an hour or so, I feed my Twitter addiction in between ordering school photos, registering for the PTO, sending out sad emails begging our families to purchase something from the magazine drive so that #1 can dress down one day next week, and checking the calendar to figure out how tomorrow needs to run.
I finally get to bed a little after 11pm, but, SURPRISE! The day isn't over yet! At 3am we are awoken by a screaming, bloody 5yr old who fell out of bed and split her forehead open. If we had a suture kit in the house, I would have considered sewing her up myself because 1) who wants to run to the ER at 3am and 2) we were literally just there two weeks ago getting staples in someone elses head for a trampoline injury and I'm not in the mood to hear the lecture on keeping my house safe for my kids. One of these days they'll call Child Protective Services and I'll contimplate the relief it would be if they took them away for just a few hours until they read my blog and realize that I'm just a mom trying to do the best that I can.