Care Survey Draws Privacy Objections
By Robert O'Harrow Jr.
Washington Post Staff Writer
Thursday, March 11, 1999; Page A01
Federal officials will soon begin collecting personal information about millions of homebound patients -- including details about their mental stability, financial status and living arrangements -- in an effort to improve service in the home health care industry.
The Health Care Financing Administration, which oversees Medicare and Medicaid, believes the new database will help federal and state authorities better track the performance of more than 9,000 home health care providers certified by Medicare.
Agency officials said analysts will use information drawn from the questions to determine if home health care companies are providing the proper response to patient problems.
Agency officials also intend to use the data to ensure Medicare pays the same amount for similar services across the country. As the home health care industry experienced rapid growth over the past decade, federal investigators found inflated billing and questionable medical practices had become common.
In addition to patients' names and addresses and a series of questions about medical conditions, the 19-page assessment asks whether patients are depressed or feel a "sense of failure." It asks if patients have attempted suicide, exhibited "socially inappropriate behavior" or made any "sexual references" during conversations. It also touches on personal finances, such as whether a patient is "unable to afford rent/utility bills." Transmission of the data will begin next month.
While HCFA maintains huge amounts of medical data about patients who receive federal benefits, the new survey includes questions that delve more deeply into patients' personal lives, according to Janlori Goldman, director of the Health Privacy Project at Georgetown University.
"There has to be a way to check fraud and abuse without intruding on patient privacy. . . . There's a tremendous risk of abuse that the information will be used for other purposes," Goldman said. "It's truly a coerced collection of information."
Civil liberties activists also said they were concerned that health care providers now will be required to compile and send along details about all patients they serve, not just those who receive federal benefits. Industry officials estimate that more than 4 million patients receive services through home care companies.
Other critics include the Home Health Services and Staffing Association, an industry group that has complained about the cost of complying with the program, and the American Psychiatric Association, which objects to questions involving mental health.
"There is no requirement that patients would be asked for their voluntary, informed consent before answering any questions," the psychiatric association said in a letter to the agency.
Even strong supporters of the plan -- such as Rep. Fortney "Pete" Stark (D-Calif.), who believes it will improve care -- have balked at what patients will be asked. "Are they to be informed that this information, including their names, will be disclosed to their state government and the federal government?" Stark asked in a letter to the agency.
Sen. Patrick J. Leahy (D-Vt.), who introduced a bill yesterday that would strengthen rules governing the confidentiality of medical records, said the effort demonstrates the need for stronger privacy laws. "The marriage of information technology with privacy rights needs a rule book that hasn't been written yet," Leahy said. "It is becoming easier to dig deeply into anyone's health and financial and personal information and no one is there to tap the brakes."
But HCFA officials said the detailed questions in the Outcome and Assessment Information Set, or OASIS, will enable them to "promote higher quality care." It also will help the agency -- part of the Department of Health and Human Services -- to reduce fraud and inconsistent billing, as Congress mandated in the Balanced Budget Act of 1997.
Under rules that took effect in February, home health care providers will be required to conduct the survey when enrolling a new patient and then every 60 days until services conclude. The data will be sent electronically to computers at the state agencies that oversee the operation of the health care companies. Then it will be sent to databases maintained by the HCFA.
"We want beneficiaries who qualify for the home health benefit to get the best care and Medicare to pay appropriately," agency administrator Nancy-Ann DeParle said in January statement. "This new patient assessment information will help Medicare both ways."
Agency officials said they needed to collect data about patients who don't receive federal benefits because they have a legal obligation to ensure the same quality of care for all patients. Patients will be notified what information is being gathered and how it will be used, officials said.
Officials also said access to the data will be extremely limited in accordance with existing federal privacy regulations. Chris Peacock, an agency spokesman, said medical researchers will not be allowed to see any identifiable information. Other government agencies will not be permitted to access the database, Peacock said.
"It's secure at all times, and access is strictly limited," Peacock said. The agency "consistently safeguards confidential information."
But critics said the government doesn't need to collect some of the information it requires.
"Whether you're depressed or not is not information you should have
to disclose to a government agency," said Denise Nagel, executive director
of the National Coalition for Patient Rights, a nonprofit advocacy group.
© Copyright 1999 The Washington Post Company