About 14 years ago, the Cystic Fibrosis Foundation (CFF) began analyzing data from its national registry of people with the disease in order to improve routine care. CF and HD are both genetic diseases, and both affect about 30,000 people in the US. CF causes thick mucus to impair lung function and digestion, and it is serious: Fifty years ago, few children born with it survived to reach grade school.
When the CFF began comparing statistics across the 120 different specialized care centers in the US it discovered a big range of outcomes, with people at a few centers living much longer than others. “That was news, because every center was doing the best they could and thought they were providing the best possible care,” says Eugene Nelson, DSC, MPH, a specialist in quality improvement in health care at the Dartmouth Institute in New Hampshire, USA. They discovered that the main causes of premature death were poor lung function and low body weight.
Who provides the best care?
Next, CFF looked closely at what the top centers were doing right. Some examples included making sure that each patient came in for regular visits four times a year, aggressively treating lung infections. High-performing centers also made sure that every patient got an annual flu vaccine to protect the lungs, stayed at a healthy weight, and took all their medications.
From these observations the foundation drew up guidelines for the whole CF medical community. With Nelson as a consultant they organized collaborative networks so that everyone involved in treating CF could learn about the most effective methods for maintaining lung function and healthy weight.
As part of that program, teams from 20 centers would come together three times a year to analyze the way they provide care, compare it against the best, and systematically improve how they do it. Each center would also track the changes in outcomes over time.The CFF also made data on each center public, so that all the clinics could measure their progress against the average and the best.
The result: Healthier patients
Today, people with CF are much healthier; the average predicted lifespan of people with the disease reached 41.1 years in 2012, up from 31.3 years in 2002, and is still climbing. New medications are part of that success, but big benefits came from using the patient registry to track health outcomes, getting patients and families involved, and setting up learning networks so that best practices are adopted widely and rapidly.
A similar kind of process has helped improve the care of rheumatologic diseases in Sweden, and treatment of irritable bowel disease in children in the US, and it can work in HD too, says Nelson, who is advising the Enroll-HD Care Improvement Committee: “Wherever you have a chronic condition, these methods tend to apply.” The crucial steps include bringing together the whole “community of practice”—experts in every aspect of the disease, plus patients and families, and the data and statistics experts that can analyze the information.
“Cystic fibrosis is an extraordinary example, but there are others waiting to happen,” says Nelson. “The chances are quite good that if the approach is applied with fidelity, it can lead to real improvements.”
This story was originally published in the June 2014 issue of Enroll!