Why should ordinary people bother to read the medical privacy rules anyway? Media and government sources continue to assert the benign nature of the new regulations, which are said to promise cost savings through database standardization along with protection of people’s medical privacy. Why be concerned?
One reason for concern is that recent HHS regulations have created an architecture
for the standardization of our medical records that facilitates their integration
into comprehensive medical portraits of individuals. Carrying out its HIPAA mandate,
HHS in August 2000 published a final rule titled "Standards for Electronic
Transactions” (hereafter, the "transactions rule”), a regulatory package that specifies
uniform nationwide formats and codes for electronic medical records (U.S. Dept. of
HHS HCFA 2000).
Although data formats and codes may sound boring and technical, they lie at the
heart of the federal government’s current quest to acquire centralized medical data
about us. Intended to standardize most electronic medical records nationwide, the
transactions rule makes it much easier to transmit and combine medical information
about an individual from diverse sources. Calling it the "most dangerous aspect of the
new regulations,” Rep. Ron Paul, R-Texas, a physician, stated:
Even Clinton HHS Secretary Donna Shalala acknowledged the threat to privacy created
by the transactions rule, stressing the importance of adopting privacy rules to offset it.
HHS stated, "If the privacy standards are substantially delayed, or if Congress fails to
adopt comprehensive and effective privacy standards that supercede [sic] the standards
we are developing, we would seriously consider suspending the application of the transaction standards or taking action to withdraw this rule” (U.S. Dept. of HHS HCFA 2000, 50365; my emphasis).
How often does one encounter a federal agency that, having just created a regulation, immediately expresses a willingness to suspend it?
A close reading of the transactions rule clarifies the reasons for these extraordinary
expressions of concern. The transactions rule mandates nationwide use of specific,
standardized code sets for recording medical information (data elements) applicable to "standard transactions.” The eight identified standard transactions are:
Coordination of benefits (U.S. Dept. of HHS HCFA 2000, 50370-72).
These categories are broadly defined. "Health care claims or equivalent encounter
information,” for example, include not only actual reimbursement claims but also, in
the absence of any direct claim, "the transmission of encounter information for the
purpose of reporting health care” (U.S. Dept. of HHS HCFA 2000, 50370,
§162.1101b).
Be Careful What You Tell Your Doctor
In other words, even without a claim for reimbursement, reports of
personal conversations with our physicians — deemed by the federal government to be
"encounter information” — are to be treated as valid input to the ever-growing medical
databases. With such a broad interpretation of the key terms, what medical transaction
would not fit into at least one of the listed categories?
Records of these standard transactions must conform to the uniform data elements
and code sets mandated by the new regulations. Data elements denote categories
of information to be reported, and code sets establish the specific codes to be
used to "fill in” a data element.
Thus, the code sets establish uniform codes for items
such as specific diseases, injuries, impairments, diagnoses, treatment, drugs, physician
services, radiologic procedures, clinical laboratory tests, and so on (U.S. Dept. of
HHS HCFA 2000, 50370, §162.1002). For example, a health care claim transaction
document might contain, as one of its data elements, the attending physician’s "diag-nosis.” The diagnosis data element would then be filled in using one of the uniform
codes covering the full range of potential diagnoses.
All covered entities — health plans, health care clearinghouses, and every health care provider "who transmits any health information in electronic form” — must use the standardized codes and data elements (U.S. Dept. of HHS HCFA 2000, 50365,
§160.103).
Even Birth Control and Menstruation Are Coded
The number and detail of these codes and elements are astonishing. Not
counting the actual codes, the basic data elements to which the codes pertain fill
11 pages, three columns per page (U.S. Dept. of HHS HCFA 1998a, 25310).
These data elements include such things as patient Social Security number, claim submission and reason code, condition codes, diagnosis code, date of last menstrual
period, mammography-certification number, family-planning indicator, patient primary
identifier, subscriber current weight, subscriber previous weight, reason for last
visit, occupation code, prognosis code, service-type code, surgical-procedure code,
and hundreds of additional items of intensely personal information.
Unique identifiers for employers, providers, and patients are also required for the
standard transactions. HHS has proposed as the "national standard employer identifier”
the employer identification number (EIN )— that is, the employer’s "taxpayer
identifying number” — stating that "each health care provider must use the national
employer identifier whenever required on all transactions the health care provider
transmits electronically” and that health plans and health care clearinghouses must use
the EIN whenever required as a data element on standard transactions (U.S. Dept. of
HHS HCFA 1998b, 32798).
Another proposed HHS rule would require health
plans, health care clearinghouses, and health care providers to use as their unique
identifiers the "national provider identifier” supported by the Health Care Financing
Administration (HCFA), consisting of "an 8-position alphanumeric identifier, which
includes as the eighth position a check digit” (U.S. Dept. of HHS HCFA 1998c,
25356). This proposed rule would require each health care provider to "obtain, by
application if necessary, a national provider identifier,” ordering all covered entities to
supply and use national provider identifiers for all standard transactions.
National ID
More contentious are the HIPAA-mandated unique health identifiers for every
American. Many people recoiled in 1998 when HHS issued a "White Paper” describing
the alternate forms that the unique identifier might take, including biometric identifiers
such as retinal-pattern analysis, iris scans, and voice-pattern analysis, among other
candidate identifiers (U.S. Dept. of HHS 1998, sec. IIIC; Twight 1999, 182–84).
When Congress later postponed implementation of the identifiers on a year-by-year
basis,2 privacy advocates expressed hope that eventual congressional repeal of the mandate for unique health identifiers might yet protect our medical privacy.
It is a vain hope. Even if Congress, bowing to political pressure by privacy
groups, "permanently” prohibited creation of new identifiers, our medical records
would still carry a unique health identifier: namely, the Social Security number (SSN)
that health care providers for years have demanded and used to identify our records.
HHS itself listed the SSN as a candidate identifier, citing its status as "the current de
facto identifier” as an advantage of its use. With or without new identifiers, medical
privacy thus remains in jeopardy.
Either way, the HIPAA-envisioned system of standardized, widely shared personal medical information will proceed unimpeded. Ironically, repeal of the new identifier requirement, though not negating the threat to
medical privacy, might even encourage public acquiescence to the emerging federal
health information system.
Whatever the chosen patient identifier, with our detailed medical histories transcribed
into standard transactions and formatted with standard data elements and uniform
codes as the new regulations require, a treasure trove of personal information
about each of us will exist in an easily manipulable and transferable form.
The proffered
shield against devastating abuse of this information is the HHS final rule, "Standards
for Privacy of Individually Identifiable Health Information,” which took effect
April 14, 2001 (U.S. Dept. of HHS OPE 2000). Do these privacy standards create an
effective shield, or are they instead a sieve through which individually identifiable
health information can readily pass?
Next: Media whitewash the anti-privacy regulations.
Footnote
2. For the December 2000 postponement, see Consolidated Appropriations Act, 2001, Public Law 106-554, 106th Cong., 2d sess., December 21, 2000, 114 Stat. 2763 (H.R. 4577), Appendix A, §514 at 114
Stat. 2763A-71. Section 514 states in its entirety: "None of the funds made available in this Act may be
used to promulgate or adopt any final standard under section 1173(b) of the Social Security Act (42 U.S.C. 1320d-2b) providing for, or providing for the assignment of, a unique health identifier for any individual (except in an individual’s capacity as an employer or a health care provider), until legislation is enacted specifically approving the standard.” Congress first passed measures delaying promulgation of such identifiers in the fall of 1998.
* * *
This article is adapted with permission of the publisher from the article "Health and Human Services 'Privacy' Standards: The Coming Destruction of Medical Privacy," by Charlotte Twight, in The Independent Review: A Journal of Political Economy (Spring 2002, vol. VI, no. 4, p. 485-511). © Copyright 2002, The Independent Institute, 100 Swan Way, Oakland, Calif. 94621-1428; http://www.independent.org.
Charlotte Twight is a professor of economics at Boise State University.
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