Meet a Collaborator: Sylvia Mauzuera

By: Sylvia Mauzuera - Family Partner, Dallas Childrens

I am Sylvia Mazuera, and I have 2 boys, 20 and 16 years old. My youngest was diagnosed with CF when he was 6 months old. My husband and I are from Colombia, South America, we have lived in Texas for 16 years and we recently lived in North Carolina for 2 years before returning to Texas. We have been involved in 2 CF clinics and are in contact with a group of CF patients in Colombia.  We have seen how CF care can differ from one clinic to another. 

I am very excited about participating in the CF Learning Network with our center because I know that if different centers share what they do well, then other centers can make changes, and improvement can be achieved. I also know that medical providers are hesitant to make changes that are not backed by research and evidence. The CF Learning Network provides both: the opportunity for centers to share what they are doing and use data to show that those practices generate improvement in patient outcomes. 

I also know that medical providers are knowledgeable in their field, but parents and patients are out there juggling the doctor's instructions with daily life. The ideal scenario is not always possible. I think if parents/patients and the medical providers collaborate and work together, the medical and emotional outcomes for the patients are much better. There have been many occasions where I have suggested to the doctor things like "let's sit down and evaluate this long list of medications to see if they still have a purpose and if my son should still take them", because the doctors look at what needs to be added for a specific situation, not frequently at what needs to be eliminated because it is no longer necessary. Something important for the patient, that may not be on the doctor's 'radar'. 

It has also been very educational to learn how the medical staff and CF clinic work and function since I have not had any medical training. If parents and patients have a better understanding on how the CF clinic works and the providers better understand what is important for the patients, any ideas and changes implemented will look more like a win-win scenario.  


Meet a Collaborator: Ashley Reeves

By: Ashley Reeves - Mental Health Coordinator, University of Cincinnati

I started my job as the Mental Health Coordinator at the UC Adult CF Program in August of 2016. This is my first job working with CF patients so I started from the very beginning, learning the basics. I read manuals, articles and blogs, talked to co-workers and patients, and tried to immerse myself in the CF culture to understand and become a part of the community. 

Shortly after I started, part of our team went to the CF LN conference. I sat in meetings and watched our team prepare for the conference, not fully understanding what the purpose was. The team came back from the conference energized, reviewing all the great work they had done with other CF providers and patients. I knew that I wanted to be a part of that. What better way to dive into the CF culture, than by understanding and creating positive change with patients?

I have learned so much by being involved in CF LN. I have a better understanding of patient care, pre-visit planning, the CF registry, and quality improvement in general. I have learned that small changes can make a big difference, and that too many changes at once creates chaos. Challenges will always come, but they can be embraced and allow better change to occur. Most importantly, I have learned that collaborating with patients is vital in creating helpful and impactful change. 

Our team has recently been focusing on co-production and pre-visit planning. Our patient partner has provided insight into the challenges she faces when coming into clinic and preparing for her visit. While we share some of these views as providers, many of her thoughts and feelings are a fresh perspective. We are making efforts to incorporate her thoughts, and the thoughts of other patients expressed through the PFEC surveys, into our clinic practices. 

I am better able to understand best clinical practices and the strengths and struggles of CF patients by participating in the CF LN. My hope is that by learning from each other, and from our patients and families, we will improve care and quality of life for our CF patients across the country.  

Meet a Collaborator: Danielle Goetz

The CF Center of WNY (formerly Women & Children’s Hospital of Buffalo) is no stranger to QI efforts. Team members in Buffalo, under the leadership of Drucy Borowitz, MD (current VP of Community Partnerships at the CF Foundation (CFF)), were part of the CF Foundation’s 1st Learning and Leadership Collaborative, and received a CFF Quality Care Award in 2007-2008 and again in year 2013. In 2013 the Buffalo center received a CFF Quality Improvement in CF Care award for annual depression screening in our clinic with stepped care interventions based on depression severity. We have disseminated this work in the Supplement to the Mental Health Guidelines and the Mental Health in CF Dropbox, and our protocol has been widely adopted by CF Centers. It has been amazing to be at the forefront of this effort, and to see Mental Health Screening become standard procedure over the last 4 years.

When I joined in Buffalo and then became CF Center Director in 2014, we added Infection Control as one of our QI efforts in addition to Mental Health Screening. Through the use of QI techniques with patient and staff input we made the guidelines a part of our regular practice. In addition, as a CF team we worked on a QI project over the last 4 years that has continually improved our weight for length in children under 24 months from the lower quartile steadily up to number 9 in the country in 2016. 

Seeing all of these projects come to fruition has shown me the power of QI efforts in affecting positive change in our Center and through other CF Centers across the country. As part of the Pilot Learning Network, I hope to lead our Pediatric and Adult Teams to continued and expanded successes in addressing our goals of helping people with CF live their dreams, improving health and quality of life. Partnering with patients and parents will be a huge focus of our efforts. I am so excited about working with our team and our Parent Partner to make our CF Center the best it can be, while sharing our challenges and triumphs with all those in the Network and hopefully the world. I believe Helen Keller said it best: “Alone we can do so little; together we can do so much.” 

Meet a Collaborator: Amy Sylvis

By: Amy Sylvis, Patient Partner, Keck Medical Center, USC

It's an incredible privilege to participate in the network as a Patient Partner. From my early 20’s I realized that CF care can vary dramatically from center to center - and I have worked ever since to find ways to improve care and outcomes for my fellow CFer's. You name it, I've explored it - eFlow long before Cayston was on the market, sex hormones in CF, the role of environmental allergies in CF, infection control, aspergillus in CF, alternative treatments (NAC, essential oils), CFRD diagnosis not by OGTT but by patient finger testing, etc. Everyone with CF deserves outstanding, effective and cutting-edge CF care to live long, healthy lives; and I have the delusion, or, belief that I can make a difference. 

I'm thrilled to learn from others in this Network - to see what I borrow to implement in my CF center and beyond. I am also very excited for the support that the Network provides - we are paving the road to an elevated form of healthcare where patients are highly involved; this can sometimes cause bumps in the road and support is the way to continue to move forward to achieve our goals. Finally, I'm excited to represent my CF center and to highlight what they do well, and also dig in more deeply with my center to make improvements where they are warranted. I believe not only that can Keck Medicine of USC can be a top 10 center nationally, but it can lead the way in patient care and help the rest of the nation improve the lives of CFer's as well. 

Highlights from the Fall 2017 Community Conference

By: Glenda Drake, Clinical Program Manager, Banner University Medical Center Tucson

As members of the LLC, quality improvement is not new to my team. We’ve performed many global aims, PDSA cycles, fishbones, run charts, and driver diagrams but the CFLN allowed me to see the impact of our efforts more clearly than in prior years. It could be that I was finally “getting” the process, since repetition breeds understanding. However, something else was different this time: seeing this process thru the eyes of our Parent and Family Advisory Committee made me more passionate than ever.

The QI 101 session was a valuable review of QI basics for the care team, but new to most family members—hearing what other care centers are doing prompted them to ask questions about our own clinic and how it works; the beginnings of co-production. At the end of day, we all were tired—but not defeated—as we viewed the tasks to come.

The break-out sessions and skill practices over the next two days reinforced basic concepts. Breaking our team up into different groups with the Cohorts from 2016 let us hear what has and hasn’t worked for other programs, forced our families out of their comfort zones, and clarified their contributions to the projects ahead. As a parent member stated,

"It was incredibly inspirational and uplifting to learn…what clinics are doing nationally to help advance the care of people with cystic fibrosis…As a Parent Partner, I am excited to apply what I’ve learned at the conference to help further enhance the treatment experience for our local families.”

As we rejoined our care teams, ideas flourished, questions were asked and answered, and we felt the revitalization of our commitment to our families and patients—to continue imagining new concepts and co-produce an environment that strives for perfection. PDSA cycles were brainstormed, refined and enhanced on-the-spot as we engaged other members of the team regarding the processes we were considering. Socializing as a team—looking past “medical staff” and “families” and finding people—was equally helpful, further enhancing co-production.

The format of the CFLN this cycle increased its impact and effectiveness as much as the content. By splitting up, sharing ideas and experiences and getting out of our comfort zones, all members of our team were shaken loose from some of the old, ingrained paradigms, and ready for productive, open-minded discussion about the changes and challenges ahead.

Fall Community Conference Highlights

By: Anissa Hostetter, Patient Partner, University of Cincinnati

Preparing for the 2017 Fall Community Conference as a first-time participant, at first, seemed a little overwhelming. I had no idea what to expect or what was expected of me. However, I read over the booklets and agendas that were sent to me ahead of time; I participated in the test run of the video conference platform with other Patient Partners; and of course, I had the support of my team members, especially the ones who would be at the conference.

Over the three-day conference, I was surprised and intrigued by how big the CF Learning Network Community is as a whole; the conference attendees were only a small portion. There's all these people: physicians, nurses, respiratory therapists, counselors, parents, other patients, and many more who are working so hard to provide Model CF Care. Everyone coming together to make things better and really make a difference. Appropriately quoted by Dr. Brent James: "Better has no limit"!

Since I am new to our team and the whole CFLN experience, it was interesting to hear other teams' trial and errors, progress on different projects, and ideas for the future. Everyone was sharing, asking questions, and offering suggestions.

Being unable to physically attend the conference due to my CF, I was able to attend virtually along with other Patient Partners. To me, allowing us to communicate with each other online and virtually with the conference attendees, was an essential part of the group experience. An example of Co-Production at its best!

I look forward to seeing many more accomplishments from our members of the CF Learning Network!


By: Pam Mertz

A place to put the passionate angst into productive processes….that is what this CF Learning Network Community Innovators group is for me!!  As a mother, there is a driving force to do all you can for your child. When faced with a diagnosis of an incurable, life-shortening disease, that driving force is fueled even more so.

The Community Innovators are a team of individual stakeholders that have ideas and desires to improve the lives of those they love, or they themselves as patients, that battle CF every day. Many of us have great ideas, but have long waited for a forum to be able to formally test, prove, and measure these ideas.  This Team is a safe, wide open space to be able to put into the process of testing out a concept, an idea, a new way to be able to think and move collectively toward improvement for all. With continuing education and equipping in the Quality Initiative process, tools are given each month as we gather to improve our methods of testing, to measure the outcomes, and to track what we are learning together.  We do not want to duplicate efforts!! Time is too short for that.

As a mom, this space gives me, personally, a platform to share those things that have worked and been beneficial in raising my son to be a healthy 18 year old that now champions his own care and volunteers to participate in clinical trials.  

As the Community Innovators Team grows, we will also grow the number of QI projects and be able to see the fruit of this labor translate into changes in how CF patients are cared for.  This is our collective goal, and as we all work towards it, we can celebrate the little steps along the way together.  


The future is happening now

By: Erin Moore

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 been following me or any of this work over the past several years, you're likely familiar with the terms "C3N" or "CF Care Model of the Future". This is it! 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 -

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 partnered with 15 more teams 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! 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?

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!

Community Innovators

By: Karen Homa

A community innovating – this sounds like a good plan to me if we want to get healthcare transforming in the direction of better care that is being produced in partnership with patients and families. I have seen incredible work being done such as a community innovator asking why haven’t I got a PFEC (Patient & Family Experience of Care) survey in the last 2 years and figuring out with her team that the email address was invalid. I’ve seen a community innovator be an equal QI team member and leading projects. There are many examples of the work we are doing.  I believe the only way we will get to a better place is by getting involved in improving care. To act as partners not only with each other but with the care teams to identify new opportunities for collaboration. Community innovators is not just a label for group members, but for me it means our active involvement and supporting each other as we learn our way into our involvement.  

2016: That's a Wrap!

By: Erin Moore

From hopeful and excited to challenged and overwhelmed, our network is experiencing all of the right feelings about the important work that is underway. Change is hard, and it is natural to feel confused and overwhelmed at the start of anything new. Our community has taken on a lot of work, and as we move forward we will continue to learn about how to best stagger our improvement efforts and support one another to change outcomes together.

We are committed to supporting you in any way that we can. In the new year, please look for continued QI office hours, one-on-one support, and templates and tools shared on the Exchange. If you have ideas for how we can better support you, please don’t hesitate to share by e-mailing!

Let's Get Started

By: USC Keck Medical Center Pulmonary Team, Los Angeles, CA

Taking the first “step” on a new project is always hard, especially when it involves implementing changes to current processes that are routine. Change is hard! After attending the Community Conference last month, we came back to our Center overwhelmed and excited at the same time. For instance, our care team firmly believes that patient partnering is essential to the CF care delivery we provide, but now we needed to include them in pre-visit planning to determine their main health concerns, issues they felt were priorities to discuss, and team members they would want to spend more time with. It was expected that this would take time and worse, who on our team would have the time to add this into their already busy workday. Our current practice involves all care team members to participate in visits and moving forward this would change everything we were familiar with. Where do we begin? Start small was a resounding theme at the conference, so that is where we started.

Two patients were contacted via phone prior to their next scheduled clinic visit. Time was spent discussing our purpose for the call (pre-visit planning aim) and then each CF person was asked what they felt they needed out of their appointment. We learned early on in this small PDSA that calls were not optimal due to the amount of time it took. Several PDSA cycles (keep it small) later, we have learned so much; people with CF want to be active participants in care, using our electronic patient portal was much easier than calling, creating a template for portal messages for consistency was needed, our clinic flow needed to change, and the list goes on.  We hope our story will encourage you to start small, educate your care team staff and providers, educate your people with CF, learn from your mistakes, and implement your successes.  

Update on Progress

By: Erin Moore

On October 9-10 we held our inaugural CF Learning Network Community Conference in Bethesda, MD and we are proud to say it was a huge success! Thirteen programs are part of the pilot CF Learning Network, and almost all teams include a parent or patient partner joining them in this work. The goal of this meeting was to learn core quality improvement methodology and the key clinical content that is the focus of the Network’s work as we think about ways to transform healthcare and health outcomes across the CF Community. 

Following an overview of the model for improvement, we spent some time getting to know one another to enhance our appreciation of what we are each bringing to this work. Self-described “super-powers” of our teams included things like strong clinical knowledge of cystic fibrosis, organizational skills, QI expertise, connectivity, perseverance, passion and enthusiasm - all characteristics that will certainly be an asset to our work. 

The energy in the room grew as we discussed what we will be measuring and how we will be reporting our data, an overview of the measures for the pilot CF Learning Network can be found in our July newsletter. Teams were able to see their own data and started to create Plan-Do-Study-Act (PDSA) cycles for what they would test to enhance data collection at their center. We launched our CF Exchange, a place where we will share what we learn through our work so that others can learn with us, enabling people and information to intersect more seamlessly in this all-teach, all-learn network. You can sign up for an account by following the link above and clicking “Sign up” on the home page.

We wrapped up our first day with activities to help enhance the understanding of quality improvement and co-production and their value in our work. First, with an exercise involving Mr. Potato Head, we tried to find a way to improve the time it took to assemble him without sacrificing quality. Then, in an exercise with Lego designed to show the importance of transparency, trust and empathy to enhance communication and create partnership to allow for true co-production in healthcare. 

We started Day 2 with a discussion on building reliable chronic care processes and productive visits, and again spent time working as teams to map out current processes and plan PDSAs to test improvement ideas. We set both 1 year and 90 day goals as teams and will work as a network to lay out our path forward.  We have a lot of work ahead of us, but the energy that came from the time we spent together dreaming about what a better future looks like will be the fuel that we need to forge ahead. 

For those who were unable to attend, you can access and share the inspiration and content from our time together:

All presentations and handouts can be found on the CF Exchange.

Powerful Ignite talks by Jim Murphy & Pam Mertz describing the opportunities we have if we can learn how to partner and co-produce care can be viewed on the CF Exchange.

The conversation that took place on Social Media can be found captured on this Storify.

Lastly, Erin Moore has turned her closing words into a powerful blog post

Meet a Collaborator: Breck Gamel

One of my favorite parts of being at the first-ever CF Learning Network Community Conference was getting to experience firsthand co-production between clinicians and people with CF and their families.  

As a Community Innovator and mom to Bennett, a 7 year old with cystic fibrosis, I had the pleasure of sitting at a table with a CF Program that included a pediatric pulmonologist, a QI specialist and a CF pharmacist.  

In our work together during the Community Conference, I gained greater knowledge of the processes and systems this particular Program has created (or have been given) to help them do their job of caring for kids with CF and their families.  I learned about the parts of their systems they felt worked well and the parts they felt didn’t work so well.  I learned about the challenges they often run up against - such as mandates from their hospital, time crunches, last-minute patient cancellations, issues with the EMR, etc.  

Partnering with them gave me a great respect for what they do each day and helped me to better see the love and care they genuinely feel for their patients.

I don’t think I was the only one who gained a lot of insight and understanding in our work together.  They seemed to gain a lot, as well.  This was especially true in the lighting up of the face of the doctor I was working with when he began to even better realize how patients and their families could be even more useful in his work.  Instead of being hesitant to give patients and families more information, he began championing them as being a great place to share information!  In an effort to hear more voices, he and his team decided to add a young adult with CF to their Patient and Family Advisory Council.  And, as a way to move their clinic from integration to inclusion, the team resolved to offer their Family Partner more leadership responsibilities in their pre-visit planning process.  

The doctor said with excitement, “Why have I never thought about this before?!”.  I smiled in delight with him, “Yes! These are easy wins!”  

Partnering with people with CF and their families are easy wins because they have so much motivation and time to do so much of the things clinicians want to do but often can’t because they are bogged down by lack of time and competing priorities.  

My favorite part of the CF Learning Network Community Conference was getting to experience a cutting edge CF clinical team better recognize the exponential power that comes with fully partnering with people with CF and their families.  

Co-producing with clinicians is most rewarding to me, as a parent of a child with CF, because it gives purpose to my pain.  If I have to watch my son suffer, then I want to know my own learning experiences aren’t in vain. There is much to be gained from patients/families and clinicians working together.  This is why I am most excited to be a part of the CF Learning Network.

Meet a Collaborator: Jeanne Weiland

My name is Jeanne Weiland and I’m a Nurse Practitioner and Clinical/QI coordinator at the Cincinnati Children's CF Center. I have been an NP here for nearly a quarter of a decade (getting old!). I started taking care of kids with CF when I was a brand new nurse in 1980 and fell in love! You can imagine how many things have changed over the years. I am always open to considering doing things differently/better. I thought our center was good at improvement and including families in our work and was close to where it needed to be, but I was wrong! When I first heard about the idea of a Collaborative Chronic Care Network (now called the CF Learning Network), well to be quite honest, it made very little sense to me. But I could feel the passion from Michael Seid and Erin Moore and that intrigued me. Each time I heard them talk about this new concept, pieces of it began to make sense to me. Finally…. I got it!! Or at least a lot of it. We can make things better faster and make them more sustainable and meaningful if all of the key partners are working on things together, across CF centers.

Our CF community is fairly small and a lot of learning goes on at individual centers, some shared on Port CF or via list-serves . Most centers have been involved in Leadership and Learning Collaboratives and have gained valuable expertise in improvement work. We also have networked closely with other CF center staff, patients and family members. And some of us are privileged to attend the North American CF Conference to hear about the latest in CF clinical care, research, education and discipline specific activities. What the CF Care Model of the Future can offer is a way for the learning, sharing, collaboration and networking among and between patients, family members, clinicians, researchers and others in the CF community to be happening 24/7/365. We have a lot to learn about how we can work together in a new way, sharing openly and honestly what works well, where we could make improvements, and what we should totally scrap! In an older edition of the newsletter, Pam Mertz wrote about her experience in CF Learning Network Design Meeting: “I felt heard. Isn’t that one of the most important factors of health and well-being?  To be heard, so that communication and forward motion that is beneficial to all involved can begin.” We all need to be heard and to listen. When we really begin to understand each other’s perspectives and learn to value each other’s strengths and expertise, we can do amazing things. Mother Teresa said “I can do things you cannot, you can do things I cannot; together we can do great things”. To me – this is what the CF Learning Network means.

One of the most exciting parts of this for me, in addition to all working together is the idea of an Exchange. You will learn more about this at the Community Conference in October. The Exchange will be a platform through which we can virtually share our work, our ideas, our hopes and dreams in a transparent, easily accessible format. It’s like a melding of Pinterest, Port CF and Facebook for CF. So now – we won’t have to wait until the North American CF Conference to learn about a new idea and then hope we can get a copy of it. We can actually have a multi person discussion about an idea – clinicians, patients, family members, and improve it on the spot. How cool! We will be able to post educational videos and materials, how we operationalize care guidelines, QI work, favorite recipes, how to get your boss or teacher to understand the impact of CF, how to drop an NG  – whatever you dream of! The Exchange will bring the entire CF community together in a way we’ve never experienced before. I have had a sneak preview of it and, I am VERY excited!

I have no doubt that some of you are still where I was a while back – wondering what this is all going to be. For those attending the Community Conference, I think that once you leave Bethesda in October, you will be very pumped about moving forward to the future of CF Care. I look forward to meeting you all or seeing old friends! And please feel free to reach out to the team if you have any questions or ideas ( I’m happy to hear from you also –

Meet a Collaborator: Pam Mertz

I am a mother of a 16 year old with CF.  My husband and I have been involved in the CF Foundation since our first Great Strides Walk in May 2000.  We have enjoyed being invited into different projects and fundraising activities wherever we are able to be productive locally in our chapter, as well as at the national level. Over the years, we have learned much and have enjoyed meeting the core character that is common in the CF community – PASSION.

When I was asked to participate in the CF Learning Network in 2015, I wasn’t quite sure what it was, but it sounded intriguing. And my husband and I have vowed to say yes to anything and everything we are capable of doing to help fund and find a cure for CF. In this collaborative environment, I was able to bring to the forefront some of the things I had long wanted to discuss and share with others things that had worked well for us as a family. It was also an opportunity to share things that hadn’t worked so well and areas of potential growth. While we have done this in our Minnesota CF community, this was a national forum that was being put together.  

Being asked to give a phone interview of “our CF Story” was therapeutic as I was able to share not only our CF journey, but the periphery of our lives that had all been affected by having a child diagnosed with CF. It was clear that this was life changing for us, and to be heard was more significant than I had realized it would be. I came away from the research interview feeling like our story had been an effective tool and would impact some changes that were looming in the CF Learning Network think-tank.

Arriving at the CF Foundation national offices for the May 2015 Design Meeting was enjoyable, as I got to interact with people that I have already met due to volunteer leadership activities. I was also able to meet people I had interacted with only via phone to date.  The collective sheer energy in the room was palatable. I truly had no idea what I was in for!

This was 2 full days of interacting and having very open dialogue in this room about targeting specific work groups that would be formed. We spent time sharing in daily life discussions of adult CF patients and hearing from caregivers and researchers. It was incredibly inspiring. To be present at this level of collaboration that was laser focused on developing a new method of delivering collaborative care was an experience that I still cannot quite define with mere words to this day. The biggest impact of the entire two days of meetings was when I was handed my name tag, and on it was a title that I didn’t expect, nor had never really been given to date as a CF mom. It simply stated “Expert.”  As I processed that, it was clear that something significant shifted within me due to that acknowledgement. I felt heard. Isn’t that one of the most important factors of health and well-being?  To be heard, so that communication and forward motion that is beneficial to all involved can begin. That meeting and the level of collaboration was something that gives me even greater hope in how we manage CF as we all work tirelessly toward a cure for this disease.

Meet a Collaborator: Michelle Prickett

As a physician at an academic medical center I wear multiple hats that require my attention in various ways. Information comes  to me through several medium including emails, patient portals, Electronic Medical Records (EMRs), text messages, pages, phone calls, conference calls and face to face meetings.  This leads to my days never having a dull moment however keeping track of information is no easy task.  Clinic days are perhaps the biggest challenge as they are typically hectic and require significant consolidation of information while compressed into individual patient visits.  Being able to communicate information effectively and efficiency is very fulfilling however poses a continuous challenge in a world of increasing volumes of data and multiple sources.

My perfect health care system would consolidate the information that is important to me into one single system or point of reference.  My perfect clinic experience would allow me to see patients with a firm understanding of both the issues that the patient wanted to discuss and what I felt was also important to care all confirmed into one system.  When I arrive to the pre-clinic huddle, our team would review the labs, cultures and lung function collected in the days prior to the appointment.  The patients would already have confirmed and reviewed  their medications, allergies and problem lists that could be awaiting my confirmation in the electronic medical record.  Potential questions and concerns patients were looking to address would already be sent and anticipated with letters, prescriptions and needs already awaiting their visit.  The clinic experience itself would contain physical exam components but would focus with majority of time on frank discussions of mutually pertinent care issues.  Any information discussed would be uploaded not only to an electronic visit summary but also imported into the note and care plan.  Guidelines and requirement would be easily visible to care team members as well as patients and allow for automatic reminders to be set.  If patients contact the office during the clinic for illness or concerns, non-acute issues could be deferred to a standard questionnaire/needs assessment and could sign up for a virtual appointment on a calendar slot.  Sick visits would be handled remotely as much as possible to provide better access to care and ensure the appointments are as well planned as possible. This ideal is not far from possible in a technical sense but will require commitment and mutual input from patients and providers like.

I am personally motivated to participate in the CF Learning Network (CFLN) as I believe that improving care delivery and education are as important as the medications and therapies that we prescribe.  Patients empowered with the proper tools and information become valuable advocates for their care.  Education requires understanding on a personal level but also how it applies to larger groups of similar peers.  The CFLN will look to refine these methods while also understanding how formal interventions can improve care across different populations.  

One of my most memorable meetings was the first future Care Model Design meeting.  I was most struck by the varied backgrounds and interests of the individuals present who were all commented to the case cause.  It was helpful to understand their perspective and to learn their view points on how to solve a common issue.

The milestone I am looking forward to most is being able to identify the interventions that work best for individual patients based off of genetic material.  This may include larger scale trials or collected information from a larger registry that is easily accessible.  Lofty milestone for sure, but dreams can come true!

Working Faster and Changing Outcomes

By: Erin Moore

Earlier this month, we had the opportunity to spend two days at a meeting with other “experts” in the CF community working to figure out how we can shift outcomes and do it quickly. This Expert Meeting was held in Baltimore on May 9th and 10th and involved about 40 people from the Planning and Stakeholder Advisory Committees. There were parents and people with CF, leaders from the Foundation, pediatric and adult care clinicians, and experts in healthcare quality improvement from inside of and outside of the CF community.

We are at the point of launching our pilot CF Learning Network to really understand the impact of doing things differently. We are creating a system that will allow us to learn across programs and from one another: patient to patient, patient to clinician, clinician to patient, program to program. The goal of our Learning Network is ultimately to improve outcomes faster, in ways that we haven’t been able to do before. The way that we think we can achieve that is by making it easier for everyone to learn and contribute. The goal of the Expert Meeting meeting was to align on how we are going to do it.

Our first day started off with Bruce Marshall sharing a bit of the history of the CF Foundation and how the strategic planning process from several years ago helped them to shift their focus from being solely on finding a cure to serving people living with CF and their families in their day to day lives. We recognized and celebrated all that’s been accomplished over the past 60 years in this community and how it has allowed us to create so many of the pieces to put this puzzle together. There was a vision of the future that was shared by many in the room: programs delivering safe, reliable, state-of-the-art care focused not only on physical health, but also on mental, social health and emotional health; an up-to-date and accurate picture of how programs and the Care Center Network are doing on key outcomes and process metrics; and an environment where care teams and people with CF have access to real-time health information to inform decision making.

We had the opportunity to learn from different stakeholders about what this work means to them and the importance of working together as we go forward. We heard from care program representatives about the processes they use for pre-visit planning (PVP) and population management, two components of the Chronic Care Model that we all agreed would be a foundation for success of the CF Learning Network. There is alignment on focusing on reliable delivery of elements of the Chronic Care Model and on building co-production capability – training clinical teams and people with CF (and family caregivers) to work together to improve care at the program level. We worked together to determine short- and long-term measures of success and discussed the ways in which we will need to collaborate to achieve them. These goals will help us to communicate what direction we need to go and set expectations on whether we need to maintain, improve, or transform.

We left with the appreciation that this work will be a process. A system is an interdependent group of people and processes with a common aim, and we were able to start to see how we, with our unique experiences and perspectives, can only create this together.

Over the next several weeks we will be working to further refine our measures and begin recruitment of the care programs that will comprise the pilot CF Learning Network. This is an exciting time, and we are so grateful to have so many of you working with us to create the future of CF care!

Crossing Disease Boundaries: Thoughts from the ImproveCareNow Community Conference

By: Erin Moore & Breck Gamel

As the CF community engages in the work to transform their current community into a Learning Health Network, we can learn a lot from partnering with existing networks on developing a culture that values a commitment to quality and safety. Key insights, lessons learned and best practices can be shared through engaging presentations, discussions, observations, and collaborations.

A few weeks ago, we had the opportunity to attend attend a Community Conference for an existing learning network, ImproveCareNow (ICN), to understand how we might accelerate the reach and pace of our improvement as we share ideas, knowledge and data transparently. We believe that extensive collaboration can help us to learn about culture change, capacity and capability building, the importance of patient and family engagement, and much more.

ICN is a Learning Health Network for people living with Crohn’s disease and ulcerative colitis. They were the original Collaborative Chronic Care Network (C3N), designed by patients, clinicians and researchers dreaming about a new and better system of care for people living with these inflammatory bowel diseases. Started in 2007, their community has grown to 86 centers across the US and Europe who collect and share outcome data, collaborate on improvement projects to identify better ways to deliver quality care, and have ultimately and most admirably improved the remission rate among people attending their care centers to 80%.

The success of ICN can be attributed to a number of factors.

ICN uses an enhanced data registry where clinical and patient reported data are entered in once generating real time insights; patient data are never more than 3 days old for both patients & providers to partner in decision making.

This registry also serves as a population management tool, generating insights about the overall health of patients at a given care center or across a group of care centers, providing the opportunity for learning and improvement throughout the network.

ICN has a knowledge-sharing "commons" called The Exchange, which is a sharing site similar to Pinterest, where patients, providers, quality improvement specialists, researchers, or anyone associated with the network can go to find answers to the questions they have and share what they're learning in their life or work - everything from videos on how to swallow pills or drop a nasogastric tube to infection control guidelines, clinical trial recruitment, and center or network level improvement efforts.

What these technologies support is the community of actors willing to actively participate in sharing and collaborating. Everyone can and should participate as actors in our emerging CF community to ensure its success.

The remarkable thing about this network, something that has grown and matured greatly over the past 9 years, is the respect that the patient and family partners and the clinicians have for one another. They have working groups and learning labs where they collaborate both within and across stakeholder groups, respecting the strengths that each bring to the table. They hang out and talk like old friends, the way relationships should be in healthcare.

So what does all of this mean for CF? For starters, we're not starting at square one. ICN, the National Pediatric Cardiology Quality Improvement Collaborative (NPCQIC) and Solutions for Patient Safety (SPS), all learning networks that have been developing and learning over the past many years, have started to lay the tracks for us to ride upon. We can learn from what they have done and are doing and model ourselves off of their success. We know what kinds of tools have the most substantial impact on patient health, and we can learn how these tools can be implemented. We can invite them to share more about the path they took to get to where they are, how they build relationships, grew trust, and struggled with transparency. We can partner with them to learn across diseases -- and we will! -- like how things such as social support, pre-visit planning and transition tools have no boundaries. We will stop wasting the precious time that we have in CF on solutions that have little impact and focus our efforts on learning quality improvement and collaboration to transform outcomes.

We'll end with a quote that sums up where we believe we are right now in our process. It's from one of our favorite books, Being Mortal by Dr. Atul Gawande:

“We are caught in a transitional phase. However miserable the old system has been, we are all experts in it. We know the dance moves. You agree to be the patient, and I, the doctor, agree to fix you, whatever the improbability, the misery, the damage or the cost. This new way in which together we try to preserve the fiber of a meaningful life - the loyalty and the individuality - we are plotting novices. We are going through a societal learning curve, one person at a time, as a patient and doctor, as human beings.”