PORTLAND, Ore. — Eleven integrated health systems, with more than 16 million members, have combined de-identified data from their electronic health records to form the largest, most comprehensive private-sector diabetes registry in the nation.
According to a new study published today in the Centers for Disease Control and Prevention’s Preventing Chronic Disease, the SUPREME-DM DataLink provides a unique and powerful resource to conduct population-based diabetes research and clinical trials.
“The DataLink will allow us to compare more prevention and treatment strategies with a larger group of patients, which will ultimately prevent more people from getting the disease and improve care for the 25 million Americans who already have it,” said Greg Nichols, PhD, lead study author and senior investigator with the Kaiser Permanente Center for Health Research in Portland, Ore.
Most other registries are smaller and are associated with a single health or hospital system in one region of the country. The United States Department of Veterans Affairs maintains a valuable diabetes research database containing a similar number of patient records, but most of those patients are men, and they are sicker than the general population.
“Our database contains an ethnically and geographically diverse population of women and men who mirror the general population with diabetes. We can follow these patients over time and expect that what happens with our patients will also happen with patients throughout the country,” said John Steiner, MD, a co-author and senior director with the Kaiser Permanente Institute for Health Research in Denver.
The SUPREME-DM (SUrveillance, PREvention, and ManageEment of Diabetes Mellitus) DataLink includes de-identified health information from nearly 1.1 million people with diabetes in 10 states: California, Colorado, Georgia, Hawaii, Michigan, Minnesota, Oregon, Pennsylvania, Washington and Wisconsin. Participating health plans include six regions of Kaiser Permanente, Geisinger Health System, Group Health Cooperative, Health Partners, Henry Ford Health System and Marshfield Clinic.
The DataLink contains test results, prescription records, hospital and clinic visit information, and vital statistics of more than 1 million people with diabetes. The project also brings together 33 diabetes researchers with diverse backgrounds, expertise and interests.
The CDC estimates that 18.8 million people in the United States have been diagnosed with diabetes, and that 7 million more have the disease, but have not been diagnosed. Diabetes, which interferes with the body’s ability to produce insulin and process glucose, is a major cause of heart disease, stroke and death. According to the CDC, it is also the leading cause of kidney failure, non-traumatic lower limb amputations, and new cases of blindness in this country. The CDC estimates that in 2007, the medical and indirect costs of diabetes totaled $174 billion.
To start the SUPREME-DM DataLink, researchers included all 15,765,529 health plan members who were enrolled in the 11 participating health plans between January 2005 and December 2009. Of those members, 1,085,947, or 6.9 percent, met the study criteria for diabetes, which included a single diagnosis of diabetes in the hospital or two separate diagnoses made in an outpatient setting; two elevated blood glucose tests conducted on separate occasions; or at least one diabetes drug dispense.
Among the 11 health plans, the percentage of people who met the criteria for diabetes ranged from 4.2 percent to 12.4 percent. The mean age of patients at registry entry was 55.7 years, and 48.1 percent were women.
The SUPREME-DM DataLink contains inpatient and outpatient health records; comprehensive laboratory test results including blood glucose, hemoglobin and serum lipid levels; and height and weight measurements. It also contains pharmacy records for more than 90 percent of patients.
The DataLink is part of a larger data-sharing project known as the Virtual Data Warehouse. The VDW was developed by the HMO Research Network, a consortium of 19 health care delivery organizations that have agreed to standardize datasets from their electronic health records to collaborate on research projects such as this one.
The study was funded by a grant from the Agency for Healthcare Research and Quality. Authors include Gregory A. Nichols, PhD, from the Kaiser Permanente Center for Health Research in Portland, Ore.; Jay Desai, MPH, and Patrick O’Connor, MD, MPH, from HealthPartners Research Foundation in Minneapolis; Jennifer Elston Lafata, PhD, from Henry Ford Health System in Detroit and Virginia Commonwealth University; Jean M. Lawrence, ScD, MPH, MSSA, from Kaiser Permanente Southern California Department of Research & Evaluation in Pasadena, Calif.; Ram Pathak, MD, FACP, from Marshfield Clinic in Marshfield, Wis.; Marsha Raebel, PharmD, and John Steiner, MD, from the Kaiser Permanente Institute for Health Research in Denver; Robert Reid, MD, PhD, from Group Health Research Institute in Seattle; Joseph Selby, MD, MPH, from the Patient Centered Outcomes Research Institute in Washington, D.C.; Barbara Silverman, MD, MPH, Maccabi Healthcare Services in Tel Aviv; Walter F. Stewart, PhD, MPH, from Geisinger Health System in Danville, Penn.; Suma Vupputuri, PhD, from the Kaiser Permanente Center for Health Research in in Atlanta; and Beth Waitzfelder, PhD, from Kaiser Permanente Center for Health Research in Honolulu.