Matthew Carroll is on a mission.
Using big data to improve treatments for children who have inflammatory bowel disease, the UAlberta pediatric gastroenterologist recently developed a faster protocol for administering a medication given intravenously, shortening the infusion time from four hours to one. This means kids spend less time at the hospital and families spend less time away from school and work.
Since joining the Edmonton Pediatric IBD Clinic (EPIC) at the Stollery Children's Hospital six years ago, Carroll has been working to improve patient treatment using data-both up-to-date medical research and detailed information about patients. He has led efforts to incorporate the newest IBD research into the clinic's treatment protocols and closely monitor the health of clinic patients using eCLINICIAN (an electronic medical record) and a comprehensive patient registry with quality assurance-based key outcome indicators.
Collecting detailed patient data helps physicians keep tabs on how individuals are responding to treatments, allowing for earlier intervention in the event of a problem. Detailed record keeping also helps the team spot trends across the clinic's nearly 400 patients (who hail from across Western Canada and the North) and conduct research in-house.
Detailed records allowed the clinic to monitor how patients responded to the new protocol and the clinic used surveys to gauge the satisfaction of families, who were overwhelmingly pleased by the change.
"Of more than 100 patients, only one didn't switch over in the long run," he said.
The innovative protocol has saved the health service precious resources, too. It was once the case that after spending four hours hooked up to machines, patients would stay another hour being monitored for potential reactions-all of which required ongoing care from nursing staff. The EPIC team is now working with other pediatric IBD centres to standardize and implement the rapid infusion protocol across Canada.
Integrating cutting-edge research with real-time patient outcomes
Carroll and his team also use real-time quality metrics to alert them to signs that a patient's health might be declining. Regular quality care outcome reports and linkage with other health-care informatics systems allow monitoring of the medical care patients receive inside and outside of the clinic. As a result, the clinic can intervene at the earliest sign of a medical complication or departure from planned care goals.
For example, the team is immediately notified through electronic reporting if one of their patients has an emergency department visit for any reason. They can quickly determine if the visit was IBD-related and ensure the patient gets rapid and appropriate care from their specialist team. Patient synopsis charts let the team look at an individual patient's progress over time, to see if there are trends or patterns in their disease control that can be improved.
Good data collection and analysis is fundamental for the clinic's internal quality control. By knowing where the problems hide, the team can focus on improving their processes within clinic to ensure the best delivery of high quality care.
"The only way you know if you're meeting your goals and outcomes is if you measure them," said Carroll. Over time, this amounts to big gains for the clinic's small patients: "We want these kids to get the best possible treatment they can and to live long, happy, normal lives."
Earlier and more precise health interventions
Canada has one of the world's highest incidences of inflammatory bowel disease (IBD), an umbrella term for a cluster of diseases that damage the digestive tract, including ulcerative colitis and Crohn's disease. About one-quarter of patients are diagnosed as children, and are at risk of long-term serious complications because of their age. They live with their disease for longer but may also be exposed to more treatments, and possible adverse effects, over the course of their lifetime.
"People have a window of opportunity for growth and development. Once you reach a certain age, that window starts to close. Chronic inflammation can have a major impact on growth and development, as well as pubertal status," explained Carroll. Before the disease was recognized by doctors, children often suffered from stunted growth and delayed puberty.
He says early intervention is needed for children to maintain normal development and avoid medical complications down the road. But the drug therapies needed to get a patient's inflammation under control also carry risks of long-term side effects. He says it is crucial that doctors make medical decisions with as much information as possible.
"Decisions we make for an 11-year-old patient now may have massive impacts when they're 30 or 50 or 80," said Carroll.