I've landed

I’m on a small airplane, somewhere over Indiana or Ohio, Coldplay’s “Don’t Panic” is playing in my earbuds. I’m looking down on my life from 30,000 feet, as I feel I have been for the past month and a half. I’m finally on my way home.

When I last had the chance to write, I was in an entirely different place than I am today. We deeply enjoyed our last days as Cincinnatian’s, packed our things, and went on our way. Hershey, PA was our ultimate destination, and I knew so very little of how winding that journey home would be or how much I would learn on my way there. From Cincinnati, we visited Charleston for a week with our family. Right before we were to leave, I got hit in the face with a line drive at a minor league baseball game and have been in bed ever since. Through the ups and downs of the past six weeks, my only regret is having been so consumed by my every day that I did not recognize all of the signs that were pointing me toward a slower, more purposeful life, and that it took getting smacked in the face with a line drive to really slow me down, to really wake me up.

 A long story short, the accident caused a pretty significant concussion, and my brain needed rest. I laid in bed – tired, sad, confused, angry – the timing was bad. I’m the social organizer for our family and I couldn’t even get out of bed as we moved into a new house in a new town and didn’t know a soul. My presence online faded to black. Text messages went unanswered. Twitter carried on without me. And I laid in the dark with only my thoughts.

When I was able to talk to my friends and family again, the biggest question they would ask was “How are you?” I don’t know how I was. I still don’t know how I am. My brain isn’t working right. My decision making isn’t rational. I go to rehab. Sometimes I check my email. I talk to the kids. I go for a walk. I go back to sleep. There’s been lots of crying trying to understand and make sense of all of this, and as the fog starts to dissipate, it is all becoming clear to me. I’m exactly where I’m supposed to be.

I left my house on Thursday morning last week with the goal of attending the most soul-filling event with the most awe-inspiring strangers and friends that I’ve ever met anywhere in the world. I was bound for Palo Alto, and I hid in a stall in the bathroom at the Harrisburg international airport, alone, and paralyzed with fear. The anxiety that I’ve acquired as a result of the concussion has been profound. I took a valium, a looked at strangers searching for support and understanding, and eventually I got on the plane. I called my husband from Chicago, overwhelmed and lost, and we walked me through how to get to my gate, how to get on the next plane, what to do when I arrive. One step at a time. I thought I could do this. I felt ready. It felt to me like what I needed, the healing presence of friends. The doctors have continued to say that only I know how I feel, and I need to balance the necessary rest with the slow challenge of rebuilding the pathways in my brain that were disrupted when I was hit with the baseball. I’m doing the best I can. I had had lunch with some new neighborhood friends the week prior, and had even made a trip to Target on my own. Social situations weren’t my problem, I thought. I couldn’t focus on a computer screen, but I could certainly have a conversation. I didn’t anticipate the overwhelming nature of the many moving parts and the many conversations that happen inside of an airport, and at a conference as vibrant as Stanford’s MedicineX.

A friend picked me up at the airport in San Francisco and for the first time in a lot of hours I felt safe again. We made our way to Palo Alto, staying with a small group of friends in an Airbnb, the perfect place away from the normal chaos of the shared spaced at the Sheraton where I’ve stayed in the past. We wore comfy clothes and caught up. We went to bed early and, in the morning, left for the conference. It was more than I could handle. A combination of physical fatigue and emotional hyper-stimulation took over and I realized that I couldn’t handle being there. I was at MedicineX for half a day and I spend the rest of my time back in the safe embrace of my friends at the Airbnb.

I’ve only ever attended MedicineX as a caregiver, and now I was a patient. But I was a patient with an invisible illness. As I stumbled past old friends on my way to get a breath of fresh air, I could only force out half a smile, maybe wave my hand, and just keep going. I saw confusion in the eyes of many old friends as I blew past with a laser focus on getting to wherever I needed to be. There were less hallway conversations, fewer hugs. But very few people knew what had happened, what I was experiencing. I wanted to stop and tell them my whole story, to listen to theirs, to reconnect like we do every year in this wonderful place, but it was taking all that I had to just focus on the immediate next step in front of me. I missed the breadth of connection that usually fills my extroverted self with so much joy, but it was replaced with a depth of connection with a simple few that was just what I needed. The best part of the conference this year was the opportunity to deepen relationships with the 5 people I shared a house with.

I laid in bed at night so disappointed in myself. I had made the wrong decision, I thought, to leave the family that I hadn’t even really been an active part of for the past 2 months, to go see my other family, my healthcare tribe. Feeling the drain brought guilt that I would be returning home and working from a void. And the entire time I knew that my brain wasn’t working right. I wasn’t sad, I was feeling sad. I wasn’t tired, I was feeling tired. I wasn’t a disappointment, I was feeling like a disappointment. There wasn’t permanence in any of this.

When I woke up on Sunday morning I was faced with the daunting task of getting on a plane again. I was still recovering from my first flight three days prior, and I wasn’t heading home. They came to my bed to coax me out of it. The drove me to the airport and arranged an escort so that I wouldn’t feel alone. They gave me hugs and laughs promises of reunions sooner rather than later. They gave me their vote of confidence that this new adventure was exactly where I’m supposed to be, and the journey is a part of that. I was on my way to starting a new job, one that I was supposed to start in August prior to getting hit in the head with a baseball. I didn’t know what would happen when I landed in Indianapolis. I didn’t know if I would be able to get to my hotel, or if I would be able to make it to orientation the next morning. I was encouraged to ride the wave, one foot in front of the other, one decision at a time. Get to the hotel. Put on my pajamas. Go to sleep.

I made it to orientation, and when the materials in front of me read, “Ask yourself everyday what you can do to improve the future” I again felt like I was just where I was supposed to be. I have a contribution to make, and I found a receptacle for it. I’m so tired of fighting, of pouring all of my energy, truly my heart and soul, into swimming against the tide. I found my wave and I’m gonna ride it for a while.

Orientation went well. My doctor and I had discussed how only I know how I feel and how it wouldn’t be a switch that turns back on, but rather a retraining of my brain, an exercising of the muscles to regain strength, physically and mentally. I spent a month laying in bed, thinking about my life from 30,000 ft above it. I fell asleep thinking about it and I woke up thinking about it. I got to sit and watch for a while. I got to take a break. The opportunity that is before me is to start exercising my mind again, in a new place and space, with this newfound experience and knowledge, at a slower pace. My new coworkers supported me in my need for breaks on those first three days. I could sit in a conference room and ask questions and take notes. I couldn’t make it out to dinner. I could sit in the common area and engage in conversation about why I said yes to this job, and what I hope to bring. I couldn’t have the same conversation while walking.

I got into an Uber yesterday afternoon on my way to the airport, finally on my way home, realizing that this was, after all, exactly what I needed. On the way to the airport, we drove past a sign for Cincinnati and I was filled with memories of that time not so long ago, of my desire to be there again where it was familiar, and safe, where it was easy and where we were all happy and life was good. What I want more than that right now is to go home, and home is in a different place now, called by a different name.

I feel like I’ve been floating above my life ever since we made the decision to move back in May, and I’m finally about to land. A thousand things have happened between now and then that have made me question our decision, and yet the universe is putting us right where we belong. The new perspective I’ve been afforded in all of this is incredible, and it’s not something that you could have ever asked for. I wouldn’t change any of it. I’m grateful for all that has happened – the pain and the fear and the uncertainty. The kids learned agility and bravery and vulnerability through this. I learned patience and kindness and gratitude. As we began our initial descent, I can’t help but feel like I’m finally landing exactly where I’m supposed to be. I wouldn’t be as tired, or as healed as I am if I hadn’t experienced the challenges of the last 6 weeks and the last 6 days. So I’m raising a glass to you, universe. A glass of sparkling water since booze is still off the table. I’m offering a toast to my team – my family and my friends, near and far, who have stuck with us on this crazy adventure. All the love to you. I want to live a life with greater purpose - the "if it's not a 'Hell Yeah!' it's a 'No'" kind of life. I want to help other people to experience this clarity and joy of living wholeheartedly without having to experience the trauma or tragedy that is often what brings us to it. Today I will get out of bed. I will pour my coffee. I will open my computer. And we will see what life brings next.

Home

If you’ve spent any time reading my writing in the past, or living as my neighbor, or being Facebook or Twitter friends with me, you know that I’m rarely at a loss for words. I have lots of thoughts and feelings, more than enough opinions, and passion that runs through me like a river. After Drew was diagnosed with CF back in 2010, I remember looking at my husband and saying to him, “I don’t know what to say. I don’t know how to tell people.” Now that we are moving, it’s not that I don’t know what to say, but rather that I don’t know how to start or finish.

I met my husband at a bar, or rather on the way to a bar back in 2003. This was before Uber and practically before cell phones when friends or friends of friends would see one another out on a Friday night and all pile into a car, lapping up to make sure everyone fit so that we didn’t have to walk the block to our destination. It wasn’t love at first sight, but intrigue. We connected and then we dated before I broke up with him. He didn’t go away though, and I’m sure glad he didn’t. He was working in Philadelphia, having graduated from NYU with a degree in Actuarial Science - a man who didn’t get as excited about exciting things as I did about non-exciting things, and as a senior in college he was exactly what I was looking for – someone with money to buy my drinks at the bar. When I graduated and moved to New Jersey, he stuck around, taking the train to visit me on the weekends, before we eventually moved in together. I started to commute from Philadelphia to New York every day for work, and he quietly and kindly walked me to the train station every morning and met me back there when I returned home, tired and cranky, every night. We talked about our next adventure, and looked for jobs where we might be able to both live and work in the same city. When he was offered an opportunity in Cincinnati to do marketing research, we decided to embark on that journey and made the move. With no new job in place for myself, I was free to explore the great wide world of…Covington, KY. I cried most days, wanting to go home, but put on a brave face and stood in line at the grocery store doing this thing they did in the Midwest that I was unfamiliar with called “talking to people”. In Philadelphia and New York we just bustle past one another, moving from thing to thing, and this new, slower pace was strange for us. But after a year in Kentucky and my having found myself a job and some new friends, we decided to stay. We bought a house and a year later got married. Our parents thought this was backward but it worked for us. Building a deck as newlyweds would have surely been the beginning of the end, so we did things in reverse at the start.

Then in 2007, we learned that alcohol can be a leading cause of pregnancy. Now married and overjoyed to be expecting, we turned our second of two bedrooms into a nursery, promptly purchased a minivan, and welcomed our precious Ella in June of 2008. I stopped working but never lost the friends that I made during those 3 years. We thought we might return “home” once we had kids, but things were going well with work and we were happy in our neighborhood. Our marriage survived a bathroom remodeling project in 2009 before we decided that we were ready for the suburbs!!  

We moved into our new 4 bedroom home on a Tuesday, then found out on Friday we were expecting again. About 3 weeks later we learned that there were not one, but two babies. We were deep in the middle of a kitchen remodel when exhaustion sunk in. Ella was one and I was enormous. This house in the suburbs felt overwhelming. Drew and Lily were born in March of 2010, and shortly thereafter Ella broke her leg just to make sure we were paying attention.

We were introduced to Cincinnati Children’s that year too. The smell of the NICU isn’t something that ever leaves you. I’ll forever be grateful that we hadn’t left Cincinnati after Ella was born, as Cincinnati was exactly where we were supposed to be when Drew was diagnosed with Cystic Fibrosis. I don’t remember a whole lot from 2010. Or 2011. In 2012, Jake came along and we felt complete. And by complete, I mean completely overwhelmed. My head was just far enough above water to breathe, and drink wine.

We had the great pleasure of worrying about how much our preschool choice would influence our kids future, and regularly consider how our parenting style will be described by them in therapy as adults. All jokes aside, we landed at the perfect place for us. Immaculate Heart of Mary has become our home. All four kids went through preschool, and some of them up to 3^rd grade, and the support and accommodations shown to us by both the staff and our friends has been tremendous in the 8 years that we have been attending. Leaving school is one of the hardest parts of our decisions to go. As our first graders sang “God Bless the Open Road” to their 8^th grade buddies this morning I dissolved into a puddle.

“I set out on a narrow way many years ago
Hoping I would find true love along the broken road
But I got lost a time or two
Wiped my brow and kept pushing through

I couldn’t see how every sign pointed straight to you

That every long lost dream lead me to where you are

Others who broke my heart, they were like northern stars

Pointing me on my way into your loving arms

This much I know is true

That God blessed the broken road

That led me straight to you”

Oh Cincinnati, as much as I never called you home, now that we are moving on I know that God blessed the broken road that led me straight to you. Cue the tears.

Since moving to Cincinnati, we bought our first (and second) house, we got married, we had 4 kids, one with a serious health diagnosis, and have made a billion memories and friends. We’re still married and on the other side of the diagnosis and way more home remodeling projects. People have seen us during our crazy (I say that as though its past tense but it’s very much still present). I’m grateful for neighbors who alerted me to naked wandering toddlers when I had too many to keep track of. I salute friends who showed up with Starbucks and wine, sometimes at the same time, during our darkest days.  We’ve had so many visitors – some who stayed for a while and some who just passed through – and every single one of them has made a mark on our life.

I started my second career here in health advocacy and activism, and I was introduced to a whole new world. The opportunities afforded to me with my colleagues and mentors from Cincinnati Childrens are innumerable. I got to see the world through an entirely different lens and I wouldn’t change any of it. The flexibility of my work has allowed me to share my vision for healthcare improvement with the world while I volunteered as the leader of a girl scout troop or coached a volleyball team in between business trips. Cincinnati pulled out my strength and courage, and carved friends out of the woodwork when I needed them the most.

I met my very best friend here when our paths collided in Cincinnati nearly 11 years ago. She moved from the west around the same time that I had moved from the east and we both landed in this place that moved more slowly. Our shared confusion created comradery that we’ve had to this day. She showed up at 5am to watch Ella when we went to have the twins, and over time graciously adopted my family as her own. She is the Godmother to our youngest and brings junk gifts with her every time she shows up. She left first, about 3 years ago, moving for her husbands job, and I cried and cried. She was the first to know that we made the decision to move a couple of weeks ago, because I needed someone to psych me up before we told the kids and she cheered me on. She’s been our family’s biggest cheerleader, and I wouldn’t know her if it wasn’t for my time in Cincinnati. On this rollercoaster of emotion that is selling a house and buying a house and explaining to kids why we have to go, I was complaining that I was eating nothing but junk and didn’t fit into my jeans anymore. She told me to lean in to the fat. That’s true friendship.

I don’t know what the best or hardest parts of living here have been, but there are lots of memories. Marriage is exciting! Parenting requires wine. Having sick kids is really freaking hard. Going to your friend’s kids funerals is even harder. But is it “living here” that’s handed me these ups and downs or is this just life? I think I’ve learned what it’s like to grow up, and that it’s not easy and it can be a ton of fun. I also don’t know what it means to be “growing up” because it’s not really a thing or a place but a process that leads us home. (Does she mean to heaven? I don’t know, let’s not get sappy.)

I have a friend who either bails me out of every jam I’m in, or laughs with me when I forget to wear shoes to preschool drop off and it’s a non-car line day. I’ve learned where the best karaoke in Anderson Township is on a Tuesday night when a friend pops in to ask if I want to go have a drink. I’m grateful for ATM’s that dispense stamps and McDonald’s who don’t judge when I order milk alone because it’s an easier option than dragging 4 kids into Kroger in the rain. Neighbors have graciously tolerated us playing 90’s hip-hop in our backyard until 2am on an occasional weekend night. I’ve learned of the generosity of my community that shows up every time we need a Girl Scout cookie order or foodbank donation or fundraiser for whatever cause I’ve recently gotten behind. I have friends who take my kids at the drop of a hat when something comes up, and I’ve lost friends who were scared away by this diagnosis that has brought more love and awareness to our lives than I could have ever imagined. I’ve learned that I will never be good at checking the red homework folder, especially not at the end of the school year while trying to sell my house.

In a final quoting of lyrics to describe this bittersweet feeling of our relocation, I was at an event last week where a friend paid tribute to another friend that we had lost too soon with the song “Home” by Philip Philips. It goes “Hold on to me as we go, as we roll  down this unfamiliar road. And although this wave is stringing us along, just know you’re not alone, cause I’m gonna make this place you’re home. Really hoping the “Settle down, it’ll all be clear” part that comes next happens sooner rather than later, but honestly, it just feels like what it’s time to do. Hershey is calling us now, and it’s time to make that place our home.

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This could be a letter to the patient man I call my husband whom my colleague respectably refers to as a hero. Maybe this ends up as a blog post or someday I can use it as a commencement speech when I’m a famous healthcare change agent! Or maybe someone will be reading this as my obituary when I actually do not survive this physical move or the days leading up to it. Either way, this is all to say thanks, Cincinnati. You’ve given us more than we could have ever dreamed of. Your kindness and generosity is more than we will ever be able to repay. We may finally purchase something that says “Cincinnati”, or root for the Reds now that we are on our way out. It’s not goodbye, it’s see you later. We’re going home.

Where do you stand?

Rather than using the Patient Registry data to recognize if your CF care center is above or below "average" on outcome measures like lung function, check out what's possible! Below is the data from 2015. These are the average lung function numbers at the Pediatric CF Care Centers across the US available on the CFF website. Why strive for "average" when you can see what's possible!

The range of average lung function from accredited CF Care Center to accredited CF care center spans from 105.8 to 76.8. Tri-Services Military Cystic Fibrosis Center has an average lung function of 105.8, while West Virginia University Charleston Division has an average lung function of 76.8. There are plenty of "guesses" as to why this variation exists, but it's time to learn and improve. We need to move past guessing and assumptions. I appreciate that socioeconomic differences exist. I appreciate that resources from center to center differ. The fact remains that until we focus effort on learning from one another and improving, outcomes in the CF community will not change. I'm not ok with with. Where do you stand?

This is what I'm talking about in my last post when I mention "variation". What if we could all learn from what the best centers are doing, the centers with the highest outcomes, to try to achieve things that aren't currently possible in other center with the current standard of care! It's time for us to become impatient, require this change, this learning, this opportunity to change the trajectory of our kids lives.

Click on the upper righthand corner of this image below to search for your center to see where you stand. Then tell me where you'd like to go from here!

I'm not okay with this (and you shouldn't be either!)

I wish I could dedicate all of my time to writing because it's the best way for me to relax. In my head I carry 1,000 thoughts that I regularly wish to share, but in the craziness of everyday life I can't seem to find the time to sit down and write it out. I want to get better about scheduling time to do this.

March was a crazy month for me. I've started to work with the FDA's Pediatric Advisory Committee in the Office of Pediatric Therapeutics. It's not a job job, just an advisory role that requires minimal time, but I did have to travel to DC for a meeting at the beginning of the month. It was a fascinating look into the decision making processes of the FDA to protect children and ensure safety of drugs and devices that go to market. I'm always eager to learn more about the complexities of this healthcare system.

Following the FDA meeting, I was off to our second CF Learning Network Community Conference that was nothing short of remarkable. The dedication of the teams in this network to improving outcomes faster fills me with hope. Finally, something that I can do, something that I can be involved in that has a direct impact on improving health and care. I can't place a PICC line, or develop the next big drug to cure this disease. I can fundraise but i'm not good at it. But this is something I can do that has the potential to transform CF care and outcomes.

Here's the thing that I don't think people understand: The efforts of the CF Foundation have been great, and I am grateful for advancements that we have made. But the truth remains:

• The CF mortality rate across the country has not improved over the last ten years. 
• The median survival in the US is 11 years less than median survival in Canada (at 50.9 years). 
• The rate of pulmonary exacerbations in the CF community has not changed since 2004.

Additionally, and we all  know this, the variation in care and outcomes differs, not only between centers but between clinicians within the same center. I know dozens of people with CF who travel to X center because they can do whatever better than their primary center. Or patients who discuss online their preferences for one clinician over another to try to receive better care or achieve better health. And that's not okay by me. Let me repeat that: I AM NOT OKAY WITH THIS. We have to do better. We deserve better. Our care center data, the data used to make clinical decisions and set research priorities is two years old. We are operating with only a rearview mirror, and I'm trying to create a hypothetical dashboard so that we can look ahead and make decisions with confidence, understanding the value of our efforts. I need the rest of the CF community to recognize where we are and say with me that this is not okay, that we deserve better, and that we are committed to working together to achieve them. 

I'm working, with 13 care centers and 30 other parents & patients to create a system that allows us to learn from every interaction so that we can reduce this unintended variation in care, get the right thing to the right person at the right time, every time, and improve care and outcomes. We are working to understand how care is provided at the best CF Centers, learning from their processes and adapting them more quickly to the needs of our center so that we can reduce the unintended variation in care and outcomes. We want to be able to seamlessly share how we are achieving the outcomes at our center so that others can learn from what we know. For example, who knows that the infection control protocol at our care center is unique to our center and has dramatically decreased the rates of infection at our center, which can leads to improvement in mortality rates and survival? I would bet that not even all of the patients at our center know this, but if they did, and if they shared that, everyone would be banging down the doors to their centers saying, 'Hey! Look at them! We want what they have! Lower infection rates, longer lives! Let us help you learn from what they did and learn together about the impact that these changes might have at our center!" What if I had the data to show the secret sauce for Achromobacter eradication (I don't). But what if I was able to collect my data and show the impact on my health and then contribute that data to an enhanced registry so that the next person to acquire that bastard achromobacter didn't have to go through the guessing process for how to treat it? This is what I'm talking about. And it's possible! I know because i'm doing it. This is what the CF Learning Network is and aims to do. Everyone deserves access to this information, but there isn’t a process in place for sharing it. That's what we are changing. The current lack of organization within and across CF care centers results in variations in care and outcomes, and a lot of time wasted trying to recreate the wheel. Raise your hand if your center is working on infection control? Or transition? Or adherence (what does that even mean?!)  Now raise your hand if you're learning from or with another center who might be doing the same thing. Who knows what impact those efforts have? What exactly are you trying to change? What what are you using to determine whether those changes are an improvement? 

Quality care and good health outcome shouldn’t be dependent upon where you receive care. In the CF Learning Network, we believe that everyone has something to teach and something to learn, and that by working together in this new way we can change the pace of improvement in the CF community so that everyone has the best chance of living their healthiest life with CF. 

So we have this incredible Community Conference in March and are now gearing up to bring on 15 more CF centers because everyone is realizing the value of this learning model and that we cannot continue to sit by and watch things stay the same. Let me give you the example of the recent article about the life expectancy for people with CF in the US and Canada having a gap of 11 years. WHO IS OKAY WITH THIS?!?! Not me, in case that wasn't clear. Can we please get impatient? Every article written about that (like this one and this one and yes, even this one written by our very own CFF ) offer guesses for why this variation might exist. What I'm saying is that I'm tired of guessing, especially given that there is a way to stop the guessing and start the learning. We are in 2017. It has been 28 years since the CF gene was discovered. We collect a ton of data and our community includes a ton of smart, dedicated folks, clinicians and patients and parents, and we need to say that this is not acceptable anymore. We need to demand that we do better. We need to figure this out because our kids and our friends lives depend on it. We need to work together. 

In another couple of weeks I should have some data from our network that I can share to show the impact of this new collaboration, of our Learning Network model, on its ability 

This is getting lengthy so i'll wrap this up but want to try to keep writing, as "To survive you must tell stories", so says Umberto Eco. Here's the story I told following the community conference at the American Society of Clinical Pharmacology and Therapeutics about the role that patients and parents can and should play in drug development and healthcare improvement. It might sound familiar if you've been reading this blog for any amount of time, but here's what I had to say:

I was trying to think of a way to introduce myself and I thought that sharing a story would be the best way for you to get to know a little bit about me. It’s a story about my 7yo son who has cystic fibrosis. Cystic fibrosis, for those of you who dont know, is a genetic disease that primarily affects the lungs and digestive system, causing a thick sticky mucus to build up in the body which can lead to life threatening lung infections and impaired digestion. The Cystic Fibrosis Foundation recommends that people with CF be seen by their care team 4 times a year where they ask questions like ‘How’s everything going? What’s his cough been like? How is his appetite? Have you noticed any changes?” And my answers typically sound something like “Good!” and “Pretty normal” and “It was down a couple weeks ago but it seemed to improve.” It’s all subjective, and its mostly from memory. You see, i’m managing my son’s CF in the midst of parenting 3 other kids, working full time, and trying to maintain some semblance of a social life.

As I reflected on these clinic visits, I thought about the value that could come from having a way to quantify the answers to the questions that the doctors were asking us. I went to Facebook and then to Google to see what things other people were using to track stuff about their health. I found an online platform that I could use, and I started to track things about my sons health. And to my surprise, trends began to emerge. I could do personal experiments, looking at changes in my data with the addition or subtraction of a medication or therapy. My care team didn’t seem all that interested in my data, but I found it to be a fascinating learning resource. I was sharing what I found with other patients and parents online, getting their input and feedback on what I was learning.

Then around the beginning of March a few years ago, Drew developed a cough. It wasn’t like his normal cough, though I couldn’t put my finger on how it was different. The frequency wasn’t the same as it has been with other infections. The sound of the cough, something that I can’t quite yet quantify, was different – not totally wet and junky, not exactly tight. His appetite was down. I had talked to his doctor and we decided to try an oral antibiotic, a typical treatment for what they would call a Pulmonary Exacerbation. After a few days and little improvement, we decided that he needed to try IV antibiotics to see if we could kick this. It’s the standard next in line treatment option for an exacerbation. You’ll notice that throughout the course of Ivs his cough still didn’t return to baseline. I was working with my peer community online, and my care team, asking questions like “Did we choose the optimal combination of medications? Is there another treatment that might help better? Are we missing something?” We added a magnesium supplement about a week after we started the IVs, something that my online community of peers had suggested when his care team was left scratching their head, and then upon completion of the IVs tried a steroid to see if that would help. These were all guesses, some based on evidence and others based on anecdotes. All seemed to maybe help a little but weren’t bringing him back to his baseline. This mystery cough continues for over a month. Through all of this, both his doctor and I are monitoring his symptoms and brainstorming together, in agreement that we don’t know what’s going on. She suggests that we may need a hospitalization if these symptoms are going to continue so that he can be monitored more closely.

Desperate to not be admitted, I start digging into my data. What on earth had happened around the time that the cough had developed that may have caused this problem. The only change that I was able to note was that we had stopped Prevacid at the beginning of February, just a couple of weeks before this cough started. He had always been on Prevacid since birth, and we had decided with his care team to take him off of it to see if it was something that he needed or could do without. And when I asked the care team how we would know if it was working, they said that we would notice a change in his bowel movements if he needed it. He takes pancreatic enzymes to help his body digest food, and the Prevacid is a means to control the stomach acid, helping the enzymes pass through his stomach and make it to his pancreas to do their job. If we noticed a change in his bowel movements, then the enzymes weren’t doing their job in regulating fat absorption because they weren’t getting through the stomach intact. I wasn’t even considering how stomach acid might impact his cough. I shared my findings with his doctor and we agreed that restarting the Prevacid was not a bad idea to try.

We restarted prevacid and within a week his cough had returned to baseline.

This change in his care was the result of a suggestion that I had made, not the care team. And it was based on data that I had collected, data that to this day doesn’t exist in his electronic health record. And there was a cost to this! It was his health that suffered - days of school missed, infection control risks associated with PICC lines and hospital admissions, antibiotics that weren’t necessary for a kid whose threat of antibiotic resistance is a real issue. There were days of work missed for my husband and myself, and an impact on the rest of our family with the limited.

My name is Erin Moore. I am the mother of 4 kids and work with Cincinnati Children’s in Quality Improvement related to the patient and family experience of care, and with Eli Lilly as an Patient Advisor. I’m what you might call an ePatient - equipped, enabled, empowered and engaged in my health or the health of someone i care for, I also consider myself a Citizen Scientist. Citizen science (also known as crowd science, crowd-sourced science, or networked science) is scientific research conducted, in whole or in part, by an amateur (or nonprofessional scientist. I do this out of necessity. It’s not possible for any one of my sons doctors to understand all that there is to know about CF, let alone his personal experience with it. I consider it my job to learn all that I can to offer a personalized approach to treating him and giving him the best chance at a good health outcome. I collaborate with my peers, clinicians and patients, to share what we know and change what we can, together. There’s additional benefits to citizen science. The massive collaborations that can occur through citizen science allow investigations at continental and global scales and across decades—leading to discovery that a single scientist could never achieve on their own. Have you ever tracked something about your health - logged steps via a fitbit, or documented the days you’ve had a headache or the pounds lost on a particular diet? Contributing what you know to the improvement of your own outcomes and the outcomes of others is citizen science, and you may already be involved!

The question that I want to present today is though is what if the next person to have a problem similar to the one my son had could learn from our experience, seamlessly? What if there was a better way to learn together from every interaction, curating content from multiple sources, sharing the value that came from our individual interactions with it, building on it for the next person whose path it crosses?

We're creating this in the work I do with Cincinnati Children’s hospital on the development of learning networks, groups of patients, clinicians and researchers working collaboratively to design and test solutions and tools that have the potential to improve care and outcomes in rare diseases. We all have something to share and we all have something to learn. There is a desperate need for us to shift in healthcare from doing things for patients to doing things with them. The experiences of our everyday lives, in caring for these sick kids, or medically complex partners, or aging parents, our experiences are our expertise and both can and should be valued as complementary to the expertise that health care providers share.

My son has a multi-drug resistant bacteria growing in his lungs that has had us in and out of the hospital for years. The medical journals suggest that he will lose roughly 4% of his lung function every year. What I need is access to real-time, trusted, reliable information on everything from novel approaches to eradicate that bacteria, to reasons why having a certain pet could be detrimental to his health. I want to know what other parents know and have tried, and I want a doctor to weigh in on why those options may or may not be good for me. I want to hear about what tracking methods people use and how they connect with their doctor between visits, but even more, how its improving their care. I want other patients to feel empowered to ask about alternatives and suggest trying something new to their doctor, no matter how novel it may be. And then I want to work with the research team to develop the research agenda. I want the next person to ask these questions to intersect with the answers that I found, seamless. Access to information like this, to people, to life saving treatment options, should not be left to the chance of a desperate parent or patient stumbling upon it on Facebook. We really have an ethical and moral obligation to work together!

Here we are in 2017, with a tremendous opportunity to utilize existing technologies to expedite the delivery of the right treatment to the right patient at the right time, every time - stuff that can be useful in clinical care and in clinical research - and yet we're not. There are seamless intersections between people and information in almost every other aspect of our lives – my Amazon Dash button allows me to order new laundry detergent while I’m standing next to my washing machine when I realize that we are running low. Coffee for my Keurig automatically shows up every month in the quantity that the internet has figured out that we drink on a monthly basis. Netflix can give me recommendations of shows that I may like, a starting point if you will, based on my previous viewing preferences. Yet it takes 5 phone calls and a trip to the pharmacy to pick up a MAIL ORDER prescription that we have taken every month since my sons birth and will likely take until the day he dies. We use fax machines to get pre-authorizations and share medical records, MY data, that I often have to pay to get access to, and when I receive that paper version it is often full of errors.

You may recognize this screenshot from the movie Apollo 13 when the astronauts lives literally depended on fitting a square peg into a round hole . The NASA engineers dump everything to which the astronauts have access on the table, and are given the challenge of using what’s on the table to transform the round receptacle to fit the square filter. It’s an impossible task, but these people are solution-based thinkers and their friends’ lives are at stake. And they figured it out. They walked out victorious an hour later carrying a contraption that was once a non-existent solution. They used duct tape and cardboard and creativity and determination and never once said “we can’t do this.” They did it because they had to. And that’s exactly how the parents of children with rare disease are – innovating with cardboard and duct tape and creativity and determination and technology to save our kids lives, because if we don’t, no one will.*

Sharing my experiences on my personal blog and at the medical centers where we receive care has opened the door to many new opportunities for me as an ePatient, like the one I have that brought me here. I work with the clinical innovation team at Eli Lilly as an ePatient advisor, blogging and helping to guide them through feedback, providing insights on how increased focus on patient centeredness and real world evidence is changing the healthcare ecosystem and how these trends may affect drug development, and keeping the patient voice front and center in clinical trial innovation.

Patients and their families experience research and care in a way that you may never fully understand. Our expertise should be seen as complementary to the care teams and researchers, and I believe that the path to collaboration and ultimately improvement is a humble awareness of that shared humanity. There are days when I think about the fact that CF is a progressive and fatal disease that does not have a cure. Then I remember that life too is both progressive and fatal. I hope you’ll consider the value of including patients as partners, true patient integration, and the profound effect that it can have on improving health and changing outcomes.

*This paragraph was adapted from mom-blogger Kelle Hampton 

The CF Learning Network

The Cystic Fibrosis Foundation has been a driving force behind research on therapeutics to increase longevity. It has a well-developed national Care Center Network, a transparent patient data registry, and long-standing quality improvement (QI) infrastructure. There are dozens of initiatives and thousands of people working tirelessly in the fight against this disease. Together, these assets have created a solid foundation on which to build a system to achieve transformative outcomes.

However, recent data suggest that progress has plateaued within the current CF care system:

• The CF mortality rate declined from 2.1 per 100 in 1999 to 1.6 in 2004, but has not improved over the last ten years. 
• The predicted median survival rose steadily from 28.9 years in 1999 to 39.3 years in 2014. But median survival in the US is 11 years less than median survival in Canada (at 50.9 years).
• The rate of pulmonary exacerbations has not changed since 2004. The number of days of treatment required for these exacerbations has increased slightly, with home IV treatment days declining and days in hospital more than making up for that decrease.
• Despite the accomplishments and transparency of the CFF Patient Registry, data are reported at more than a year lag, and the existing technology has not kept pace with advances in registry technology, much of which has the potential for real-time .
• Cost pressures continue to rise both for clinical care and therapeutics.

If you've followed the work I've been doing in any capacity over the past several years, you're likely familiar with the terms "C3N" or "CF Care Model of the Future". We've made it! We're there! We are now, officially, the Cystic Fibrosis Learning Network (supported through a grant from the Cystic Fibrosis Foundation and the James M. Anderson Center for Health Systems Excellence at Cincinnati Children's Hospital). 

We're not the first disease community to do this. The Crohn's & Colitis community became a learning network (read this: ImproveCareNow) in 2007. At the time, clinical research said something like the greatest potential for remission, an outcome measure in this disease community, was roughly 68% given the currently available medications. Once they organized themselves into a Learning Network, sharing across centers, creating a real-time data registry, involving patients and parents in the identification and creation of solutions and tools, they started to grow the number of patients in remission well beyond the amount suggested by clinical research. They now have more than 80% of their population in remission with no new medications, just simply by sharing seamlessly and stealing shamelessly what works best throughout their network; by thoughtfully testing out improvement initiatives using the Institute for Healthcare Improvements Plan - Do - Study - Act cycles; truly, by working together, learning from every interaction and spreading what works. 

There's also the Learning Network for the Heart Community, the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC). For the past 7 years, a group of clinicians, researchers, and parents, from across 60 medical institutions have been collaborating to ensure that families of children, who receive a diagnosis of Hypoplastic Left Heart Syndrom (HLHS), and other univentricular hearts, have hope. Together, NPC-QIC and Sisters by Heart, a parent partner organization, have harnessed the power of quality improvement tools and methods to improve the health outcomes for these patients, promote transparency of outcomes data, and enhance communication between clinicians and parents. To date, patients have a 95% chance of surviving the interstage period, 77% of whom have satisfactory growth during the interstage period. Read their one pager, its fascinating - https://npcqic.org/sites/default/files/NPCQIC_1Pager_2016_11_15.pdf

There are more than just these two Learning Networks doing fascinating work. In fact, there are 5 well-established learning networks and 6 emerging learning networks, one of which is the CF Learning Network. 

Thirteen CF Programs were recruited for the first wave of the CF Learning Network in July of 2016 and each team includes at least one parent or person with CF on their team to collaborate on this work. Additionally, we have a team of Community Innovators, parents and people with CF who are organizing their improvement ideas and using QI methodology to grow the number of community members who are equipped and enabled with the skills they need to create and sustain strong care partnerships. We expect approximately 15 more teams will be joining the our network for the second phase of our pilot in the summer of 2017. In short, we are a group of patients, parents, clinicians and researchers working collaboratively to reduce the unintended variation in CF Care and ultimately improve outcomes by identifying and testing solutions and tools that have the potential to improve health and care in the CF Community, learning from every interaction and sharing what we've learned. Want to know if your center is participating? Ask them! Want to be a part of this? Join us! Email me (erin.moore@cchmc.org) and I'll send you the information for our monthly calls. Your center does not have to be participating for you to join us. This is about the community coming together, bringing everyone's good ideas and thinking about the impact that they have on the outcomes that are most important to the community, collectively. 

Our aim is to achieve outcomes that are not possible through the current system of CF Care. We're working to take the guess-work out of CF Care. We expect that, by December 2018, the pilot of our CF Learning Network will have demonstrated progress toward improving outcomes and established an infrastructure for ongoing collaborative learning so that your health outcomes aren't dependent on your zip code or what your doctor happens to know.

During the design phase we worked with all stakeholders in the CF Community to dream up the perfect system for CF care and then thought about what we would need to change in order to achieve that - What are we trying to change? How will we know that a change is an improvement? What changes do we need to make to see those improvements?

Check out this vision - what if we could create a system for CF care that achieved this, simply by working together smarter, in the Learning Health System Model. This gives me so much hope!

The CF Learning Network serves as an engine for innovation that designs, tests, pilots and implements innovative ideas that have the potential to change outcomes. Together this community is working to create an immensely different health system that improves health and quality of life for people living with cystic fibrosis.

This isn't a dream anymore! It's really happening, and I can't wait to show the world what we can do!