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!