The US government has, for years, collected rich data about the performance and outcomes achieved by individual dialysis facilities across the country. For just as many years this information has been kept secret. ProPublica obtained the data under a Freedom of Information Act (FOIA) request and has made the data available—in the form of an interactive database—online.
Using the database, you can find information about mortality, hospitalization, infection, anemia control, dialysis adequacy, transplants, clinic conditions, date of last inspection, and other information about any dialysis facility in the country by entering a facility name, address, or zipcode.
As ProPublica notes, this information has traditionally been provided only to state health agencies and has been purposefully kept from the audience that needed it the most: Dialysis patients.
ProPublica asks why the information has been withheld. Barry Straube, chief medical officer for the Centers for Medicare and Medicaid Services (CMS) cited a concern that “some data was incomplete, or that it had been submitted inconsistently by providers.” Northwest Kidney Centers, a Seattle nonprofit that operates 14 dialysis facilities in the Seattle area and widely known for excellent patient outcomes, has consistently published its data publicly, putting its reports online last year. “Having this information validates for us how we’re doing—we have a baseline,” Joyce F. Jackson, Northwest Kidney Centers chief executive, told ProPublica.
Perusing the ProPublica database, I was able to compare my present dialysis facility with the one I used in the past, as well as facilities I’ve used while traveling, verifying my subjective impression. My current dialysis facility’s mortality rate—an alarming 26 percent—is the highest in the immediate area, but is partially explained with a three percent mortality v. expected ratio that is much lower than the national norms. Disappointingly, the facility hasn’t been inspected since 17 July 2008, about the time it opened.
This inspection process, as pointed out by another ProPublica dialysis article by Robin Fields, is woefully inadequate. It’s not uncommon for dialysis facilities to go without inspection for 10 years or more. These recertification surveys are supposed to take place every three years. The lack of adequate inspection almost certainly contributes to the fact that the US has among the highest dialysis mortality and hospitalization rates in the industrialized world. “There’s more and more of a tendency to be sloppy,” John Capelli, a New Jersey kidney specialist and former president of the Renal Physicians Association, told Fields. “You’re more reliant on facilities to run themselves. If you had regular inspections, units wouldn’t allow that kind of deterioration to happen.”
The inspection problem, as Fields reports, is a result of the nature of the oversight system. “The federal government sets standards for dialysis clinics, as well as other types of health care facilities, but pays state health agencies to enforce them,” Fields writes. “States conduct recertification inspections at specified intervals and more limited checks following complaints. A recertification typically involves inspectors observing operations for several days, poring through medical records and other logs and interviewing staff and patients.” In almost 11 years of dialysis, I’ve never been interviewed by an inspector.
In 2000 and in 2003, the US Government Accountability Office (GAO) proposed requirements for more frequent inspections and allowing CMS to fine repeated serious violations. Congress ignored the recommendation.
In response to Robin Fields’s yeoman work in documenting and reporting the dialysis situation in the US, Senator Chuck Grassley (R- Iowa) is demanding answers from federal regulators about dialysis. “I have a responsibility to the more than 100 million Americans who receive health care coverage under these programs to oversee their proper administration and ensure that taxpayer dollars are appropriately spent on safe and effective medical treatments,” Grassley wrote in a letter to Donald Berwick, CMS administrator. Grassley’s two biggest campaign contributors throughout his career? Blue Cross/Blue Shield and Amgen, Inc., the manufacturer of Epogen (the outrageously expensive drug used for anemia management in dialysis patients).
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