Homecare and Privacy

Thomas Cagle (nh-adapt@juno.com)
Fri, 2 Apr 1999 18:28:56 -0500

When you look at the current rash of "commit-to-community" legislation
that has been passed
in many states this could be a disaster for us.

From: Marta Russell 
Subject: Homecare and Privacy
Date: Thu, 1 Apr 1999 11:24:00 -0800

I think this represents less autonomy for disabled individuals and more
medicalized supervision by "professionals" who "know what's best" for

Under Fire, U.S. Amends Plan to Collect Health Care Data

                  By Robert O'Harrow Jr.
                  Washington Post Staff Writer
                  Thursday, April 1, 1999; Page A05

The federal Health Care Financing Administration intends to scale back
a new effort to collect personal information about millions of home
care patients, amid questions about the initiative from Vice President
legislators and privacy activists.

Starting this month, the agency had planned to require home health care 
providers certified by Medicare to routinely fill out a 19-page
of more than 4 million homebound patients, including those who do not 
receive federal benefits.

The agency's Outcome and Assessment Information Set, or OASIS, 
planned to require more than 9,000 home health care providers to record 
whether any of their patients -- including those not in federal programs
are depressed or feel a "sense of failure."

The survey would have asked if they have attempted suicide or exhibited 
"socially inappropriate behavior" and also touched on personal finances, 
such as whether patients could afford their rent.

Officials at the agency, which oversees Medicare and Medicaid, believed 
the new database would have helped federal and state officials improve 
care for patients and determine whether home health companies are 
providing adequate care.

Agency officials also planned to use the data to fulfill a congressional 
mandate to ensure Medicare pays the same amount for similar services 
across the country.

Now, after an article in The Washington Post and a barrage of questions 
about the program, agency officials say they will collect identifiable
only about patients whose care is paid for by the federal government, 
and they have pledged to "do a comprehensive review of the privacy 
issues" before the effort begins on April 26.

Gore and Health and Human Services Secretary Donna E. Shalala 
requested the agency work with the Office of Management and Budget
to assess the privacy implications, officials said.

Rep. Edward J. Markey (D-Mass.), who met with HCFA Administrator 
Nancy-Ann Min DeParle to discuss his concerns last week, said
in a March 24 letter to the agency: "I was encouraged to learn in our
meeting yesterday . . . HCFA has reconsidered its policy on collecting
this information in identifiable form from non-Medicare patients."

Agency officials defend the data-collection program, saying details 
about a person's life, coupled with facts about their medical 
conditions, are crucial to providing quality care.

Officials said access to the data, which first is transmitted to state 
health agencies, will be extremely limited. But HCFA's deputy 
administrator, Michael Hash, acknowledged in a statement that the
agency is modifying its program.

"At the request of the vice president, HCFA has agreed to do a 
comprehensive review of the privacy issues related to the new 
proposal," Hash said, adding: "We appreciate Representative Markey's
concerns and agree that we must explore new ways to protect patient
privacy, such as     speeding up the encryption of data and eliminating
the use of identifiable data for non-Medicare and non-Medicaid patients."

Critics of the initiative praised the change.

But psychiatrists, privacy activists and others said a host of questions 
remain unanswered, including precisely what will happen
if a patient refuses to participate in the assessment.

Critics also have asked the agency whether patients will
be explicitly informed about the personal information that will be
collected and how it will be used.

"At a time when Congress and federal agencies are grappling 
with how best to protect the privacy of medical information, we
better make sure that we have our own house in order," said Sen. 
Patrick J. Leahy (D-Vt.), referring to the August deadline Congress 
faces for passing medical   privacy legislation before responsibility 
for crafting medical privacy rules reverts to HHS under a recent law.

"I remain troubled by the broad scope of OASIS and have not yet 
gotten adequate answers from HCFA."

Janlori Goldman, director of the Health Privacy Project at Georgetown 
University, called on the agency to delay the program until these and 
other questions have been resolved. A spokeswoman for the agency
said there are no plans for a delay.

In a March 22 letter to the agency, Goldman said she worries that 
personal information collected by the government for one purpose 
could be used for another purpose under federal privacy laws,
without a patient's consent.

"Unfortunately, the applicable law here -- the Privacy Act of 1974 -- 
extends very little assurance that the collected identifiable data will
handled confidentially and securely," Goldman said.

                            Copyright 1999 The Washington Post Company

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