Going for the Records in Diabetes
Dr. Sanjeev Mehta and "black book"
Upgrading Joslin’s electronic medical record system will accelerate research and enhance care delivery
Ever since Dr. Elliott P. Joslin began documenting his patients’ experiences in the late 1800s, physician-scientists at Joslin Diabetes Center have been poring over clinical data to improve care and patient outcomes. Whether stored in Dr. Joslin’s fabled “black books,” paper charts or computers, this information has helped doctors pose and answer questions about the disease and its life-threatening complications.
But researchers’ ability to evaluate this trove of clinical data—the largest on diabetes in the world—could be significantly expanded if the system were upgraded with new hardware, software and staff.
Joslin leaders plan to transform the center’s current repository of patient information, its electronic medical record (EMR) system, into a premier tool for clinical research. “We have a tremendous opportunity to advance knowledge about diabetes health-care delivery and improve patient outcomes, and to do it in a cost-effective way,” says Lori Laffel, M.D., M.P.H, chief of the Pediatric, Adolescent and Young Adult Section.
Healthcare providers around the country are moving toward leveraging health information technology like EMR systems to save lives and reduce costs, and the federal government has designated billions of dollars to help stimulate these moves. Joslin was an early adopter when it launched its EMR initiative in 2004 using NextGen Healthcare software. Today, the system maintains data on about 40,000 adult and pediatric patients.
Among its clinical benefits, the EMR tracks patient visits to the Joslin Clinic, helps generate treatment plans, and signals when someone is overdue for services or uses a piece of medical equipment that has been recalled.
It is also valuable for quality improvement efforts. For example, the Joslin Clinic used the database to quickly identify and contact patients and providers who were using the glucose-lowering drug rosiglitazone after a 2007 scientific report suggested the drug might place patients with type 2 diabetes at higher risk for heart attacks.
Joslin leaders knew from the start that, in addition to facilitating care, its EMR would be a goldmine for research into type 1, type 2 and gestational diabetes.
There are currently more than 150 clinical studies taking place at Joslin to examine the natural history of diabetes and evaluate treatment options such as lifestyle interventions, educational programs, medications and new technologies. Some of these studies tap information from the EMR with patients’ identifying information removed to protect privacy. (All studies receive appropriate oversight to maintain national and institutional privacy standards.)
But the current EMR system has limitations for patient-based research. Laboratory and clinical data are located in different portions of the EMR, making them harder to
access. In addition, Joslin investigators must wait for the database’s software programmer to handle their requests.
Aiming for “research-ready”
“We have used the system for six years and identified what people want to change to make it more effective for both patient care and research,” notes pediatric endocrinologist Sanjeev Mehta, M.D., M.P.H., physician champion for the Center’s EMR initiative.
To make the EMR more “research-ready” and allow investigators to design and conduct studies in a smoother and standardized way, Joslin scientific leaders are working with chief information officer Edward Charbonneau on a three-pronged plan that involves:
1. Creating a clinical “data warehouse” that would integrate and regularly update clinical information stored in three different systems.
2. Analyzing the quality of the EMR’s existing data and then creating a system for maintaining its quality.
3. Developing a “user interface” that enables investigators to search the data contained in the warehouse.
Allison Goldfine, M.D., who heads Joslin clinical research and is co-leading the initiative, believes a more flexible EMR system will help doctors assess how well patients are achieving current care goals and identify patterns among patients who do or don’t achieve these goals.
“By looking at people who came to Joslin over the years and asking, ‘Who develops eye complications or kidney complications?’ or ‘What role does smoking or a specific gene play?’ we can better understand the physiology and problems associated with diabetes,” Dr. Goldfine says. “Finding patterns in outcomes might lead to new treatment strategies and also help us target therapies to those who would benefit most—and avoid adverse effects in those who wouldn’t.”
“We hope the EMR will generate new questions that will then lead to answers for improving care and finding cures,” she adds.