Patients WaitBy Kim S. Nash | Posted 2007-05-14 Email Print
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The information management problems that beset Kaiser Permanente's kidney transplant program.
Patients Wait--and Wait--for a Kidney
After the third time in a year he thought he was scheduled for surgery to replace his failing kidneys, only to see the date pass by, Bernard Burks had enough. On that day in February 2006, he jumped into a car with friends, he says, and drove 90 miles from his home in Sacramento to the Kaiser Permanente hospital in San Francisco, without an appointment, determined to find a person to talk to him.
At 56, his right forearm bearing two large bumps from the shunts used to connect him to a dialysis machine, he was working to keep his real estate business going while battling the kidney disease that started him on dialysis on Christmas Day 2001. Burks had plenty of reasons to be upset at Kaiser, a $34 billion health maintenance organization headquartered in Oakland. In 2004, Kaiser told him and 1,500 other patients that if they wanted their care covered, they had to transfer from two University of California medical centers where Kaiser was sending them for pre-transplant treatment to a new renal transplant center Kaiser was opening in San Francisco.
Burks moved to the new facility, but then, he says, Kaiser lost records of his transfer, along with credit for the three years he had already spent on the kidney transplant waiting list at UC-Davis. Burks' daughter had offered to give him her kidney, but Kaiser couldn't seem to get the surgery scheduled. He would call the transplant center, he says, but his calls were rarely returned.
At Kaiser's San Francisco medical center, he rode the elevator to the transplant unit and walked down the hall. "I've been calling down here for weeks!" he remembers telling the receptionist. "I'm tired of this!"
He refused to leave until someone agreed to speak with him. After about an hour, he says, transplant coordinator Mary-Pat Sherman came out. "I was just about to call you," he remembers her saying. "We're inundated."
More than a year later, his face still tenses at the memory. "That's not my problem!" he recalls saying. Reached at her office at Kaiser, Sherman refused to talk to Baseline.
Burks, however, would soon discover he was not the only kidney patient struggling with Kaiser.
Kaiser opened its transplant center in 2004, but so bungled paperwork and procedures, according to state and federal investigators, that less than two years later, it shut down the facility.
Trouble at the center came to light last May, after the Los Angeles Times and KPIX-TV in San Francisco, which were tipped by a whistle-blower, reported on increasing wait times for Kaiser patients on the national kidney transplant list and other problems.
Few details about the exact nature of Kaiser's information management problems have been reported. However, in an attempt to document Kaiser's missteps, Baseline, for the past five months, has studied audit reports of the federal Centers for Medicare & Medicaid Services and California's Department of Managed Health Care (DMHC), which investigated Kaiser's transplant center, and reviewed court documents filed in cases against Kaiser. Interviews were conducted with key players, including patient Burks; whistle-blower and former employee David Merlin; officials at the United Network for Organ Sharing (UNOS), which oversees national transplant waiting lists; and health-care and information management consultants familiar with medical data governance and public information about Kaiser.
- An assortment of information management problems plagued Kaiser's kidney transplant center:
- During Kaiser's startup, there was no specific procedure established to transfer data on the initial 1,500 patients to UNOS, acknowledge officials from that organization as well as Kaiser.
- Kaiser compiled no master list or database of patient names to check that it had the records of all the patients who had transferred into its kidney program, according to Medicare and DMHC.
- More than 1,000 patient records had missing or incorrect data, such as erroneous Social Security numbers or missing test results, which delayed re-registrations on the national transplant list, according to Medicare. As of September 2005, a year after the facility opened, 330 Kaiser patients, including Burks, were still not credited with wait-list time they had accrued at the University of California, according to UNOS.
- The center, working mainly from paper records gathered from the University of California medical centers, according to Medicare, could take months to collect a missing data point, such as blood-test results, both Medicare and DMHC found.
- The transplant center, meanwhile, had no systematic way to track and analyze patient complaints, both Medicare and DMHC said, which would have alerted Kaiser to trends in problems.
- Kaiser staff worked with "inadequate" written guidance on how to do their jobs, according to DMHC, which also found that most of the center's staff lacked transplant experience. And while Kaiser named a transplant director, it failed to designate a chief executive responsible for the overall management of the center, a Medicare requirement.
In all, Kaiser failed to adhere to five state and 15 federal regulations.
The problems reflected Kaiser's "lack of effective planning," DMHC concluded, which "placed Kaiser patients at risk for disruption in care and potentially life-threatening delays in care."
In 2005, the center's first full year in business, twice the number of patients died waiting for kidneys at Kaiser as received transplants the reverse of regional trends, according to the Scientific Registry of Transplant Recipients (SRTR), a research group in Ann Arbor, Mich., that tracks U.S. transplant data. All 56 patients who received kidneys at Kaiser that year were still alive one year later, a key metric tracked by SRTR. However, Kaiser managed kidney transplants for just 6% of the patients on its waiting list, while UC-San Francisco, for example, transplanted 7% and UC-Davis 27%.
"I doubt that anything on the scale of the Kaiser problems ever occurs in transplant," David Magnus, director of the Stanford Center for Biomedical Ethics at Stanford University, says in an interview. "It really was an unusual situation fraught with difficulty." Magnus testified on Kaiser and other transplant centers at a California Assembly committee hearing last August.
Clinical and administrative staff at Kaiser either declined to comment for this story or didn't return calls. Matthew Schiffgens, a Kaiser spokesman, declined to make anyone available for interviews. He provided limited information to Baseline, via e-mail, citing "ongoing regulatory and litigation matters." Kaiser attorney Ronald Lamb did not return a call seeking comment.
In public statements, Kaiser executives defend its medicine but admit some administrative mistakes.
"The transplants were good. The transfers were done very badly. We did not anticipate how complicated that was," George Halvorson, chairman and chief executive of Kaiser Permanente, told the Commonwealth Club, a current-events discussion group in San Francisco, in March. "We really did screw up on the administrative side of those transfers."
Most companies don't risk harming customers if they mismanage information. But the potential for data management disaster hides in every organization, according to Tom Redman, president of Navesink Consulting Group, which consults with companies about data quality.
Whether by reeling in business groups previously outsourced, merging with another company or buying a new customer list, companies regularly must collect and make usable massive amounts of customer information never an easy task.
- Data broker ChoicePoint, for example, makes money selling consumers' personal information it collects from various sources. However, the company has been sued in the past by people who say their homeowner's insurance, auto insurance or employment status was messed up by data inaccuracies in reports supplied by ChoicePoint. Those suits have been settled or dismissed. In a Web post addressing "top myths" about the company, ChoicePoint says it can't change public information it didn't create.
- Last year, $1.34 million in tax refunds for Tennessee residents was returned to the Internal Revenue Service as undeliverable, according to Nashville newspaper The Tennessean. The IRS attributed the problem to incorrect or outdated addresses it had stored.
- FedEx last year had to recall 8,500 W-2 forms after workers reported that a portion of the forms contained pay information that wasn't theirs, according to The Orange County Register in Santa Ana, Calif. FedEx told the newspaper that its internal processing center may have misaligned the forms when printing them. The IRS said that although the mishap would cause FedEx to miss its Jan. 31 deadline for getting the forms to employees, the agency considered it "an honest mistake."
- A primary factor in The Hershey Co.'s well-known failure to fill retailers' candy orders at Halloween 1999 was that Hershey hadn't entered into its new SAP enterprise software all the locations where workers routinely warehoused chocolate bars and licorice. The software didn't know about all the product Hershey had available to ship, and stores didn't get the candy they were expecting. "We'd had a real problem with inventory inaccuracy," Kenneth Miesemer, then-director of Eastern distribution operations at Hershey, later acknowledged in a speech. Hershey's sales dropped $134 million that quarter, compared to the same period a year before, in part because of fulfillment problems.
And Redman says that not having detailed processes for moving data and/or not appointing specific people accountable for it can hobble business plans. "You see this over and over," he says.
Technology isn't the hard part of data management. Stewardship is, says Rob Karel, an analyst at Forrester Research in Cambridge, Mass. "It's a governance and process breakdown," he says, "happening all the time, across industries."