Meet a Collaborator: Anna K. Saulitis

By: Anna K. Saulitis - QI Coordinator, Rush University Medical Center

Each summer, I receive a handful of emails from social work students—they are eager to find out what healthcare social work is. They want the details of my day-to-day. I share a few typical words of advice with each one: listen more than you speak, patients are the experts, see challenges as opportunities. They are often surprised by my final suggestion – look for ways to practice Quality Improvement.

When I started my current role as the Rush CF social worker I had no idea it would include QI work. Crisis management, insurance, and difficult conversations? Sure! Run charts, data, and PDSAs? Excuse me, what? Now, nearly six years and as many QI projects later, I can’t imagine what my practice would be without the knowledge and tools that are the framework of healthcare quality improvement.

I participate in the network as the QI coordinator for our Rush team because I value the way QI provides a foundation and a structure for the pursuit of excellence in clinical practice. The coordinator role was an opportunity to manage a new and exciting approach to our team’s projects (and gave me a chance to talk more than I already do!) Being the coordinator of a project outside of clinic work challenges me to improve my communication, organization, and time management—valuable skills to maintain in the evolving world of healthcare!

Meet a Collaborator: Cindy Murphy

By: Cindy Murphy - Parent Partner, Boston Children’s Hospital

Why this CF Mama Bear became a Parent Partner......

I am a self-proclaimed CF mama bear. What this means it that like most CF parents and care givers, I will do whatever it takes to help my daughter Amanda live a long and healthy life. For example, when she was born 14 years ago, I was unfamiliar with the Boston area and avoided driving into the city having grown up in a small town in Connecticut. When I needed to take her to frequent appointments in Boston, I didn’t hesitate (even with the Boston cab drivers nudging me along as they sometimes do!). If it meant driving into Boston to get Amanda to a doctor’s appointment, there was no stopping me.

Being a CF mama bear means doing everything in my power to help her, from meeting with school staff to educate and partner with them in providing her daily meds and strategizing how to survive flu season, to avoiding 2nd hand smoke at all costs. Light up a cigarette near her and watch out, my bear claws come out (as politely as possible)!

When asked if I would be interested in joining the CFLN team at Boston Children’s Hospital last year, I gladly accepted and was excited to have the opportunity to participate. While heading in to attend my first meeting, I started to wonder what I would be able to contribute to the team. Sure, I have years of experience caring for my daughter, but I have zero experience in the medical field. Will I be able to contribute and bring suggestions to this group of medical professionals? My team quickly put me at ease and welcomed my input and suggestions.

Fast forward to the Spring CFLN conference in Minnesota in April. If you had told me when I first joined the team that I would be representing my care center and explaining our team’s poster on pre-visit planning to medical professionals, I would not have believed it.

So what have I learned over the year as a parent partner? There is a great deal of work being done at my care center and centers throughout the network. It is exciting to collaborate and share ideas through the Patient and Family Partner calls, network webinars, CF Learning Exchange and Community Conferences. My care team and the entire CFLN network is dedicated to identifying and implementing process improvements, increasing “co-production” and improving the patient and family experience. We all know that our care teams are essential in the life of a CFer, so having a strong and effective partnership is critical.

It has been a fantastic experience and I am thankful for this network and the work being done to help Amanda and others with CF and am excited at the continued work and projects in process.

"Why do you participate in the network & what are your hopes for the network?"

Kristina Dingus-Keuhlen - Community Innovator, Texas

I’m a 30-something, married to my best friend, Nick! We have the privilege of being a full-time auntie and uncle to our ten-year-old nephew, Jack, in a multi-generational home including my dad! We are lovers of music, dancing, travel, and animals. We have a suburban farm within the city, including four dogs, two bunnies, two birds, and a giant fish tank full of aqua friends!

My best friend’s daughter was diagnosed with CF in utero. Over the past ten years I have witnessed their journey: the struggles, highs and lows, uncertainty, hospitalizations, successes, and the excitement of medical advances helping to create a better quality of life for the entire family. My “niece” and best friend are two of the strongest, bravest, and fashionable ladies around. I’m honored to be a small piece of their lives. I’ll do everything I can to help find a cure so they are able to celebrate as many tomorrows, together, as possible.

I stumbled across the CFLN one day as while looking for CF and mental health data as I prepared another paper for my PhD program. One of my topics of interest is medical family therapy, particularly within the CF community. I’m a Doctoral Candidate who has reached dissertation phase. My research is to identify the biopsychosocial needs of individuals with CF and their caregivers. I seek to determine the specific need for mental health education, awareness, and implementation for this demographic. Anxiety, depression, quality of life, marital satisfaction, and how to best incorporate systemic mental health care into the care centers moving forward are my focus.

As a Marriage and Family Therapist Associate, I’m a passionate advocate for mental health awareness in all realms. The CF community astounds me: from their acceptance, partnerships, tenacity in fundraising and vocalizing the need for a cure and better treatment, to the collaborative nature of the Care Teams, this is a phenomenal group full of inspiring individuals!

Inside and outside the therapy room I believe having a daily mindfulness practice focused on being present, gratitude, and unrelenting positivity are key contributing factors to finding joy in our individual pursuits of happiness.

My hope is to contribute my talents as an emerging researcher to help incorporate mental health treatment into the already amazing collaborative care model and to help improve overall quality of life for all families who have a loved one with Cystic Fibrosis.

Carrie Stradley - QI Coordinator, Cook Children's Medical Center

From the beginning of our QI journey with LLC6, we have seen true change from our PDSA’s and smart change ideas. These changes have been evident throughout our clinic as well as for our patients and families. When asked to join the CFLN, we were a little apprehensive. We had a lot of new staff and were concerned we would not have the “right stuff”. One of our biggest questions was who would be our physician leader and the coordinator?

Ultimately, we wanted to rev up our process and have the opportunity to learn and collaborate with other centers. An added benefit was to learn how to improve family engagement and the process of co-production.

Several members of our QI team as well as our parent partner were relatively new to QI. The CFLN has provided a great starting place for those new to QI as well as a good review for the more seasoned members of our team. This has allowed us to refocus our efforts on the necessary steps to improve care and develop new skills along the way!

Being part of CFLN keeps us accountable and always pushes us to do more. After each conference we come back with new goals and ideas. We appreciate when our coaches remind us that we can’t do everything at once. Another invaluable benefit is the protected time away from other responsibilities to devote to team discussion and planning.

Hopes for our team and the CFLN include aspirations to continue to make an impact on our patients and families for many years to come. We truly understand the value of collaboration with other care teams. CFLN not only makes collaboration with other centers possible, but they also foster and fully support this process. Through the help and guidance of CFLN we will continue to strive to make our patients and parents partners in their care. Ultimately, we want to be a part of making more tomorrows!

Highlights from the Spring 2018 Community Conference

Our fourth Community Conference took place on April 19-21 in Minnetonka, Minnesota and was hosted by one of our very own CF Learning Network (CFLN) programs; the University of Minnesota. The host team began with a Minnesota fact-filled welcome and ended with a Prince inspired flash dance mob plus a moving original poem from a parent who lives in Minneapolis. They did a fantastic job hosting and have set the bar high for when the other CFLN programs get the opportunity to host in the future!

Sandwiched between the welcome and send-off were a thought provoking presentation on connections, co-production and networks led by Paul Batalden and a motivational speaker Gretta Grosch who used improv with a comedic touch to teach our clinicians and patients/families how to better communicate !

Here are some stories shared by two attendees.

Jon Flath

Patient Partner, University of Minnesota

I had the unique opportunity to attend the spring conference both in person, on Friday, and online, Thursday and Saturday. Being able to attend in person meant I was able to finally meet the many people I have worked with over the years. It was definitely a highlight of the conference for me.
It was fitting that Paul Batalden opened up the conference speaking about Dr. Warwick, who was a Minnesota CF doctor, who developed the patient registry which we now know as Port CF. Port CF plays a key role in the collection and analysis of data that helps reveal areas of improvement. The new measure FIEx, which determines when an exacerbation took place and if it was treated, was one of the big takeaways from the Port CF data that was presented at the conference. Although Dr. Warwick has passed away, it was inspiring to see how the work he started is being passed on today.

One of the great things about this network is that as patients we aren’t just invited to attend, but we are welcomed, listened to, and needed as partners. You can see this in the breakout sessions, and the entire conference. I was able to see in person all the work that is involved with bringing this conference experience to those that can only attend online. There were multiple people in each room running microphones, cameras, and other tech equipment. There’s a serious amount of planning, and work that goes on to make the virtual experience as close to being there as possible. It was very noticeable on the days I attended online just how much care and work went in to it.

As Saturday wrapped up and the conference was coming to a close, the entire room sang happy birthday to celebrate one of the patient partner’s 60th birthday. It was a great reminder and encouragement that a goal with this network is that those of us with CF can celebrate our 60th birthdays and beyond and live long full lives. It’s this hope that drives us to preserve through the obstacles. I left the conference feeling encouraged, and inspired by patients, parents, and all the clinic staff that puts in the hard work to help us live those long full lives.

Julianna Bailey

Quality Improvement Coordinator/ Registered Dietitian, University of Alabama at Birmingham

From my perspective as a QI Coordinator, the three main highlights of the CFLN Spring Community Conference were communication/team building, effectively partnering with patients, and projects to assess declining FEV1.

One of my favorite talks at the conference was the team building and meeting skills session. Initially, our team focused on applying communication skills to interaction with patients and families, but quickly realized that it can actually be harder to apply these skills within our close-knit clinical team. One thing from this session that really resonated with me was that “QI doesn’t work without productive meetings,” and effective communication is essential to productive meetings. We had several insightful discussions about team dynamics and improving communication on our team throughout the CFLN Community Conference, and we took home several change ideas – including assigning meeting roles and using the communication “pearls” with each other, as well as with patients/families.

The breakout sessions on partnering in care, the Ignite talks, and the insight from VIPs throughout the conference provided actionable ideas and resources to help our team provide more collaborative care. The main changes our team plans to make is to have both our team and some of our patients fill out the partnership assessment at certain intervals. This tool will help us do a pulse-check on how we’re doing with partnering and provide direction on improvement.

Finally, the focus on FEV1 really stood out to me, largely because our team has been working on our own multidisciplinary project to address Rapid Pulmonary Progression in our center. The plenary talks on FIEx and Population Management for FEV1 Decline closely align with what our center is currently implementing. It was especially valuable to connect with other teams that are doing similar projects on lung function decline and nutrition and learn from each other – which is really what the CFLN is all about!

Overall, the conference was excellent, and I feel privileged that I was able to attend. There were too many amazing sessions to highlight in this brief article, and I also found myself continually wanting to be in two places at once!

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.” 

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!