Richard Aplenc specializes in caring for children with leukemia. Here, he talks about how data helps him do his work.
One of the first patients Richard Aplenc, M.D., Ph.D., MSCE, treated had acute myelogenous leukemia (AML). His experience caring for this patient led him to a career in research as a core faculty member of the Center for Pediatric Clinical Effectiveness at Children's Hospital of Philadelphia. Today, his work is focused on the treatment of AML. Here's how the Pediatric Health Information System (PHIS) helps him conduct research.
What does the availability of PHIS data mean for your work? We could not do this research with any other dataset in the world except PHIS. CHA is willing to allow us to use the data in novel ways, like merging it with data from the Children's Oncology Group, the Center for National Blood and Marrow Transplant and the United Network for Organ Sharing.
How has this affected clinical care? We've known African American children are more likely to die from AML than Caucasian children, but the cause was unclear. PHIS data show African American children have a higher chance of dying with a first course of AML chemotherapy. About 60 percent of that increased risk is because they are sicker when they get to the hospital. PHIS data also showed we aren't treating children differently when they get to the hospital. That was meaningful. It tells us if we want to change this disparity, we need to understand the barriers to coming to the hospital for some within this population. This has led us down a new line of research to develop an intervention.
What is the most creative way you've used PHIS? We look at groups of patients with newly diagnosed leukemia by using a combination of their discharge codes with their billing data. In pediatric cancer, that approach improves the ability to have a homogenous patient population, which allows you to answer questions in new ways.
What should clinicians who don't use PHIS know? It allows you to follow patients over time and look at their billed inpatient and ED care. It should be possible to do something similar with Medicaid data, but PHIS is easier to access. It takes expertise to work with the data in a sophisticated way, but you learn by doing.
Research using PHIS has generated more than 500 published studies. How has this affected the industry? One of the issues with studying children—there are fewer children than adults. It's often hard at any one center to get enough patients to do studies that are meaningful. PHIS addresses this because hospitals are federating their billing data to create a data resource. There is no other country in the world that has the richness of data for this number of pediatric patients. When I started writing grants, there were 200 PHIS-related publications. Now there are more than 500. This speaks to the importance of the data source to the pediatric community.
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