Photo by Pietro Jeng | Unsplash
They say two heads are better than one. What about 20? What about 100?
People with a wide range of perspectives and experiences participate in Learning Health Networks (LHNs) because they can drive meaningful improvement more quickly together than if any of them worked on their own. Based on the IHI Breakthrough Series Collaborative learning model, LHNs are working communities of patients, clinicians, and researchers who share data openly and continuously to achieve bold and audacious goals.
For almost two decades, Cincinnati Children’s Hospital Medical Center (CCHMC) and the Institute for Healthcare Improvement (IHI) have used system redesign principles to test and scale up LHNs to improve health and accelerate the harvesting and sharing of knowledge. About a dozen active Learning Health Networks have had notable success with increasing the proportion of children with inflammatory bowel disease in remission, improving child reading proficiency, narrowing health equity gaps, decreasing elective preterm deliveries, and many other patient-centered outcomes.
Bringing people together to work on health care improvement is also the foundation of IHI Strategic Partnerships (SPs). IHI engages with a select group of organizations worldwide in Strategic Partnerships with an eye toward driving system-wide transformation.
CCHMC is a longtime Strategic Partner, and at a recent SP gathering, they were one of 10 organizations who participated in an adaption of a World Café — rounds of small-group conversations for both teaching and learning — with improvers from around the globe. In the following interview, Stephen Muething, MD, and Peter Margolis, MD, PhD, both co-directors at CCHMC's James M. Anderson Center for Health Systems Excellence, describe the value of networking for learning and improvement.
On explaining the Learning Health Networks concept
Peter Margolis: We wanted to share that Learning Health Networks bring together patients, clinicians, and researchers to tap into the expertise and insights of all the participants in health care to develop systems and process improvements that produce better outcomes for people living with a particular condition.
Stephen Muething: We thought that maybe people in the group may have heard about Learning Health Networks, but they may not fully understand what they are. We also thought that talking about them might spark some good discussion, and it did. We’ve always believed that the more people you get involved [in LHNs], the more problems get tackled. But then people in the group started asking us these great, provocative questions: What are the bottlenecks you’re facing [as you expand]? Is it training? Is it model adherence? Is it competencies of people in the networks? What are the limits to growth? When I take part in a World Café-style of sharing with the Strategic Partners, my head gets pushed and challenged in the best possible ways.
On the power of co-producing improvement with patients
Peter Margolis: Patients and families are not [part of Learning Health Networks] for their opinions. They’re there for their expertise. They’re partners. They have as much to say as the doctors. And that's a big reframing for a lot of people. Co-production happens with an honest invitation to everybody to contribute and an understanding that progress depends on people’s full participation.
Stephen Muething: Peter’s been part of a group of patients, families, improvers, clinicians, and researchers who have met over the last 15 years or so and agreed they were going to try and make everybody in the US with inflammatory bowel disease and Crohn’s disease have perfect outcomes. They decided they’d never make big progress if they didn’t work collaboratively. Over time, they've increased the percentage of people in remission from around 65 percent to 85 percent. This means there are thousands and thousands more people who can now live their lives, go to school, go to work, and do what they want to do because of this learning network. And this has happened with no new drugs, no new billion-dollar investments. This has happened by figuring out the power of working together.
On the barriers to spreading Learning Health Networks
Peter Margolis: The biggest thing that gets in the way is that [a Learning Health Network] is a mental model as much as anything. Typically, people think about organizing health care systems in terms of top-down control. Many organizations have a lot of pride about how good they are. They all have quality improvement departments now. So, why do we need to bring [clinicians, patients and families, and improvement teams] together? To some people, that might seem like fluff and unnecessary. There are plenty of other barriers, but that would be the key if I was to pick just one.
Stephen Muething: We’ve been working on sharing stories, data, and literature, and we’ve made progress, but it is slow. We're at the point where we’re saying, “Why isn't everybody doing this?” We can’t seem to convince enough people fast enough to give this a try. The best we've been able to do is bring people to an individual learning network’s learning event. These learning events are the ultimate “all teach, all learn” experiences where teams are passionate about helping each other. Participants often describe the events as “game changing” and the turning point for making improvements. After someone is there for a day, maybe not even the whole day, the most common reaction is to come to me with their mouth open and go, “This is unbelievable. I have never seen anything like this in my life.” You get improvers, researchers, parents, and kids working together instead of as competitors or in isolation, and it’s like a revival. They’re sharing data and pointing out flaws, and the energy is electric.
On addressing health equity with Learning Health Networks
Peter Margolis: We’re at the stage of describing and raising awareness about the gaps. We haven’t succeeded in closing the gaps yet, but the value of the network is it provides a venue in which you can have important conversations, and these are communities of people who, when they recognize a problem, they will act collectively to solve it. It’s sobering how hard it is to tackle equity. But what's encouraging is that the conversations are coming up over and over again. They are not going away and that’s important.
Stephen Muething: All the networks have realized through a lot of conversation that they can’t be a truly good learning network unless they’re figuring out their equity gaps and working on them. The Children’s Hospitals’ Solutions for Patient Safety is made up of about 150 children’s hospitals. About 50 of them decided they needed to identify their equity gaps by looking at their data in terms of race and ethnicity. They just said, “Okay, we’ll do it.” They did it in three to six months. Historically, it would’ve taken much longer. There might have been a lot of discussion about going to NIH or AHRQ to get a grant and then they’d publish [their findings] in five years and then people would read it, maybe. Instead, by the end of 2020, they were sharing data. They’ve shown that there's a Black-White gap on central line infection rates across all the children’s hospitals, and they’re already saying, “What are we going to do about it? Let’s go.” It shows what’s possible when you have that urgency, that partnership, with everybody working to shrink the time from seeing the problem, understanding the issue, and then starting to solve it. [Seeing improvements in equity] taps into people’s intrinsic motivation. When you talk to people who take part in learning networks, they talk about how amazing it feels to be part of something bigger that can truly make the world a better place.
Editor’s note: This interview has been edited for length and clarity.
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