Why It Matters
For years, pediatric cardiologists and surgeons faced the challenge of helping critically ill children in severe heart failure by adapting cardiac assist devices designed for adults. Beginning in 2017, they came together as the Advanced Cardiac Therapies Improving Outcomes Network (ACTION) to standardize care, spread knowledge and know-how, and collect data in a shared registry. Within three years, the incidence of stroke in these children had dropped 50 percent and a collaboration with device manufacturers led to an FDA indication for use of an adult device in children. In addition, ACTION has collaborated with industry to develop educational tools to help patients, families, and providers around the world use these life-saving strategies effectively.
The example described above is from one of several Learning Health Networks (LHNs) across the globe. LHNs show what is possible for a new way of conducting research that prioritizes true collaboration with those whose lives are most affected by research practices and outcomes — patients. The timeline of this approach — three years — stands in contrast to the oft-quoted 17 years for evidence to diffuse into practice.
LHNs are a direct response to longstanding challenges that have plagued both clinical and health services research. These challenges include slowness (breakthroughs take too long to translate reliably into practice) and inadequate research participation (30 to 50 percent of clinical trials fail to enroll enough patients). This also includes inequity in research methods and selection of research questions and a failure to build trust with patients, families, and communities to equitably source and deliver new solutions.
Over nearly 20 years, Cincinnati Children’s Hospital Medical Center (CCHMC) and the Institute for Healthcare Improvement (IHI) have used system redesign principles to test and begin to scale up LHNs to improve health and accelerate the production and sharing of knowledge. Based on the IHI Breakthrough Series Collaborative learning model, LHNs are enduring, working communities of patients, clinicians, and researchers collaborating to redesign health systems. LHNs blur the artificial distinctions between clinical care, health system improvement, and research. These methods accelerate the translational cycle of developing new approaches, demonstrating whether they work, and improving their implementation effectiveness.
Successful examples of LHNs include the Ohio Perinatal Quality Collaborative, a community of organizations and clinicians that designed, tested, and disseminated improved approaches that reduced length of stay for babies across Ohio by more than two days and went from evidence to statewide impact in about three years. The All Children Thrive Network brought about a 43 percent improvement (from 46 percent to 66 percent) in the percentage of 11,000 Cincinnati Public School children proficient in third grade reading. The All Children Thrive Network also achieved an 18 percent reduction in bed days (about 190 fewer days in the hospital/year) for children in the three poorest neighborhoods of Cincinnati with 8,800 children. LHNs have also demonstrated effectiveness in improving outcomes by decreasing serious safety events by 50 percent, reducing hypoplastic left heart syndrome mortality by 40 percent, decreasing elective preterm delivery by 75 percent, increasing by 26 percent the proportion of children with inflammatory bowel disease in remission, and narrowing health equity gaps in communities.
A free virtual conference held in June 2021, hosted by CCHMC with assistance from IHI and sponsorship from Patient-Centered Outcomes Research Institute (PCORI), brought together patients, clinicians, and health improvers to share state-of-the-art clinical research that offers new insights into collaborative research. The meeting also explored the agenda for future research on how to further transform research systems so that they are more nimble, more adaptive, and faster. The conference included presentations and panel discussions about innovative, patient-centered clinical research such as N-of-1 trials and the use of real-world evidence from large patient registries.
Questions for Further Exploration
As improvers, we know that system performance is never an accident. Systems are built and organized by the people within them. The key questions we plan to explore together include:
- What are our major learnings so far? What is our degree of belief that the LHN model is ready for scale up?
- How can we change how we measure success? Instead of focusing on money and publications as the primary measures of what matters, we must assess transformative patient impact, speed to implementation, and the collaborative contributions of all. How do we measure those things?
- What is the environment for this work? Are influential stakeholders ready to support the LHN approach? Have we generated enough will and interest to propagate the model? Does this will and interest translate to funding and support to take this work forward?
- How relevant and useful is the LHN approach to patients and families?
- Does the LHN approach promote equity in research? Do we consistently ask whose voice and what kind of evidence “counts”?
- What are the practical next steps? How do we refine the model and take it to scale?
In some settings, the COVID-19 pandemic has been the catalyst for the kind of innovation and progress that is possible when scientists and frontline workers collaborate and share data on a global scale. We need to expand that collaboration to include patients, families, clinicians, and researchers as equal participants. We believe that LHNs demonstrate the best of what is achievable when we work together.
Pierre Barker, MD, MB, CHB, is IHI's Chief Scientific Officer. Peter Margolis, MD, PhD, is Co-Director, James M. Anderson Center for Health Systems Excellence at Cincinnati Children's Hospital Medical Center. Marianne McPherson, PhD, MS, is a Senior Director at IHI.
You may also be interested in:
What Would a Health-Creating System Look Like?
Why Improving Health Care Isn’t Enough
Special Issue — Collaborative learning health systems: Science and practice