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.
We're not the first disease community to do this. The Crohn's & Colitis community became a learning network (read this: ImproveCareNow) in 2007. At the time, clinical research said something like the greatest potential for remission, an outcome measure in this disease community, was roughly 68% given the currently available medications. Once they organized themselves into a Learning Network, sharing across centers, creating a real-time data registry, involving patients and parents in the identification and creation of solutions and tools, they started to grow the number of patients in remission well beyond the amount suggested by clinical research. They now have more than 80% of their population in remission with no new medications, just simply by sharing seamlessly and stealing shamelessly what works best throughout their network; by thoughtfully testing out improvement initiatives using the Institute for Healthcare Improvements Plan - Do - Study - Act cycles; truly, by working together, learning from every interaction and spreading what works.
There's also the Learning Network for the Heart Community, the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC). For the past 7 years, a group of clinicians, researchers, and parents, from across 60 medical institutions have been collaborating to ensure that families of children, who receive a diagnosis of Hypoplastic Left Heart Syndrom (HLHS), and other univentricular hearts, have hope. Together, NPC-QIC and Sisters by Heart, a parent partner organization, have harnessed the power of quality improvement tools and methods to improve the health outcomes for these patients, promote transparency of outcomes data, and enhance communication between clinicians and parents. To date, patients have a 95% chance of surviving the interstage period, 77% of whom have satisfactory growth during the interstage period. Read their one pager, its fascinating - https://npcqic.org/sites/default/files/NPCQIC_1Pager_2016_11_15.pdf
There are more than just these two Learning Networks doing fascinating work. In fact, there are 5 well-established learning networks and 6 emerging learning networks, one of which is the CF Learning Network.
Thirteen CF Programs were recruited for the first wave of the CF Learning Network in July of 2016 and each team includes at least one parent or person with CF on their team to collaborate on this work. Additionally, we have a team of Community Innovators, parents and people with CF who are organizing their improvement ideas and using QI methodology to grow the number of community members who are equipped and enabled with the skills they need to create and sustain strong care partnerships. We expect approximately 15 more teams will be joining the our network for the second phase of our pilot in the summer of 2017. In short, we are a group of patients, parents, clinicians and researchers working collaboratively to reduce the unintended variation in CF Care and ultimately improve outcomes by identifying and testing solutions and tools that have the potential to improve health and care in the CF Community, learning from every interaction and sharing what we've learned. Want to know if your center is participating? Ask them! Want to be a part of this? Join us! Email me (email@example.com) and I'll send you the information for our monthly calls. Your center does not have to be participating for you to join us. This is about the community coming together, bringing everyone's good ideas and thinking about the impact that they have on the outcomes that are most important to the community, collectively.
During the design phase we worked with all stakeholders in the CF Community to dream up the perfect system for CF care and then thought about what we would need to change in order to achieve that - What are we trying to change? How will we know that a change is an improvement? What changes do we need to make to see those improvements?
Check out this vision - what if we could create a system for CF care that achieved this, simply by working together smarter, in the Learning Health System Model. This gives me so much hope!
The CF Learning Network serves as an engine for innovation that designs, tests, pilots and implements innovative ideas that have the potential to change outcomes. Together this community is working to create an immensely different health system that improves health and quality of life for people living with cystic fibrosis.
This isn't a dream anymore! It's really happening, and I can't wait to show the world what we can do!