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Health Freedom Watch
March 2009


A Positive Perspective on Health Privacy Rights
By Sue Blevins

I am positive that many Americans cherish their liberties and privacy.  That's why I remain confident that when people truly understand the ramifications of the HIPAA privacy rule and the economic stimulus law (H.R. 1), they are going to demand change.  For example: 

Privacy advocates will insist on patient-consent rights once they realize that the recently enacted economic stimulus law promotes a national health information highway by "planning” for electronic health records (EHRs) without opt-out or patient-consent provisions.  Unless patient-consent rights are enacted, individuals won’t have final say over whether their personal health information—including genetic information—is shared with more than 600,000 health-related organizations. 

Dietary supplement users won't tolerate their personal health information being released to the FDA without users' consent (a permitted public-health activity under the HIPAA rule).  Moreover, the economic stimulus law fosters non-consensual exchanges by promoting EHRs and allowing them to be exchanged and/or sold for public-health purposes

People seeking psychotherapy undoubtedly will take steps to protect their intimate information once they discover that under the current HIPAA rule, individuals’ psychotherapy notes can be shared with the Secretary of Health and Human Services (HHS) without individuals’ consent (including private-paying patients).  The economic stimulus law did not fix this gigantic gap in the HIPAA rule—one of many big gaps.  (See article below titled “How the Economic Stimulus Law Affects Your Health Privacy Rights” with citations to federal regulations and the economic stimulus law.) 

Some physicians and patients will opt out of government health programs altogether in order to maintain a truly private doctor-patient relationship when they find out that policymakers are using the federal government’s huge purchasing power to require doctors to use EHRs—regardless of doctors’ and patients’ wishes.  

What’s more, I am persuaded that the link between privacy and freedom is inextricable. And I agree wholeheartedly with Ellen Alderman and Caroline Kennedy that the right to privacy is an important attribute of a civilized society.  In December 2000, HHS quoted their 1995 book, The Right to Privacy

“Privacy covers many things. It protects the solitude necessary for creative thought. It allows us the independence that is part of raising a family. It protects our right to be secure in our own homes and possessions, assured that the government cannot come barging in. Privacy also encompasses our right to self-determination and to define who we are. Although we live in a world of noisy self-confession, privacy allows us to keep certain facts to ourselves if we so choose. The right to privacy, it seems, is what makes us civilized.” [Emphasis added.] 

Working on defending Americans’ health privacy is a worthy goal.  The Institute for Health Freedom is grateful for the support of all our donors and readers who aren’t giving up on making sure individuals have the freedom to control access to their most intimate information—their personal health information.


Sue A. Blevins is founder and president of the Institute for Health Freedom in Washington, D.C.

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How the Economic Stimulus Law Affects Your Health Privacy Rights

There are conflicting reports about how the economic stimulus law affects citizens’ health privacy rights. Most members of Congress didn’t have time to read the bill (H.R. 1) before voting on it.  And President Obama didn’t read the bill in its entirety before signing it into law, according to CBS news.  Moreover, hardworking, busy Americans don’t have time to pour through complicated bills, let alone cross-reference the text with the existing HIPAA rule (which was amended by the law). 

This is why the Institute for Health Freedom (IHF) offers the following facts to help people decide for themselves whether the HIPAA privacy rule and economic stimulus law’s privacy provisions provide true health privacy—the right to decide if one’s personal health information can be disclosed to others. 

HIPAA Rule and Economic Stimulus Law:
Who Controls the Flow of Personal Health Information? 

HIPAA Privacy Rule

Economic Stimulus Law:
Privacy Provisions

Individuals do not have the final say in whether their personally identifiable health information—including genetic information—is shared with more than 600,000 health-related organizations.  Their personal information can be shared for purposes related to treatment, payment, and health-care operations without individuals’ consent.  

[See 45 CFR Subtitle A, Subpart E—Privacy of Individually Identifiable Health Information; section 164.502(a)(1)(ii) “Permitted uses and disclosures.”]


Individuals still do not have final say in whether their personally identifiable health information—including genetic information—is shared with more than 600,000 health-related organizations

 

 

Does not specifically mention or define the term “electronic health record.”

 

 

“Plans” for the use of electronic health records (EHRs) AND legally permits EHRs to be sold for several purposes, including public-health and research purposes.

 [See H.R. 1, Title XIII, Subtitle A—Promotion of Health Information Technology, Sec. 3001(c)(3) (p. 117) and Title XIII, Subtitle D—Privacy, Sec. 13405(d) (p. 153).]


Individuals do not have the right to prevent their personal health information from being shared with the FDA regarding adverse events with respect to food or dietary supplements, including problems with the use or labeling of a product. 

[See 45 CFR Subtitle A, Subpart E—Privacy of Individually Identifiable Health Information; section 164.512(b)(1)(iii)(A) “Uses and disclosures for which an authorization or opportunity to agree or object is not required.”]


Individuals still do not have this right.  

As noted, the law plans for the use of EHRs, which will make sending health records to the FDA as easy as clicking a mouse.  

[See H.R. 1, Title XIII, Subtitle A—Promotion of Health Information Technology, Sec. 3001(c)(3) (p. 117).]

The Secretary of the U.S. Department of Health and Human Services (HHS) legally has access to every citizen’s health records, including psychotherapy notes; and covered entities (doctors, hospitals, etc.) are required to disclose personal health information to the Secretary to determine compliance with the HIPAA rule. 

[See 45 CFR Subtitle A, Subpart E—Privacy of Individually Identifiable Health Information; section 164.502(a)(2)(ii) “Required disclosures” and section 164.508(a)(2)(ii) exception to “Uses and disclosures for which an authorization is required.”]


This provision remains unchanged.

Individuals can request that their information not be shared for treatment, payment, and health-care operations, but providers and hospitals do not have to agree to the request. 

[See 45 CFR Subtitle A, Subpart E—Privacy of Individually Identifiable Health Information; section 164.522 “Rights to request privacy protection for protected health information.”]

Individuals can request that a “covered entity” (provider, hospital, etc.) not share their information with health plans, and the entity must comply.  But individuals can only exercise this right if they pay out of pocket in full.  [See H.R. 1, Title XIII, Subtitle D—Privacy, Sec. 13405(a) (p. 150).] 

Moreover, they still can’t prevent their data from flowing to many other third parties, such as public-health researchers.

Individuals do not have a right to an accounting of disclosures of their personal health information related to treatment, payment, and health-care operations. 

[See 45 CFR Subtitle A, Subpart E—Privacy of Individually Identifiable Health Information; section 164.528(a)(1)(i)  “Accounting of disclosures of protected health information.”]

Attempts to give individuals a right to an accounting of disclosures.  However, it will only apply to patients whose providers use electronic health records; and the HHS Secretary must draft regulations determining how much information about the disclosures will be allowed.  The law reads “Such regulations shall only require such information to be collected through an electronic health record in a manner that takes into account the interests of the individuals in learning the circumstances under which their protected health information is being disclosed and takes into account the administrative burden of accounting for such disclosures.”  [See H.R. 1, Title XIII, Subtitle D—Privacy, Sec. 13405(c) (pp. 151-152).] 

In other words, it’s not clearly stated in the law how much people will really know about the disclosures of their information.  But even so, the “right to know about disclosures” is not the same as the fundamental right of privacy—the right to decide if the information can be disclosed in the first place.  

Also, citizens will receive an accounting of unauthorized breaches of unsecured data.  However, the law doesn’t give citizens a right to notification regarding breaches of secured data. How will they find out if their secured data was breached?   [See H.R. 1, Title XIII, Subtitle D—Privacy, Sec. 13402 (pp. 146-149).] 

Also, since HIPAA authorizes many people to access patients’ data without patients’ consent, this doesn’t guarantee true privacy—the ability to restrict disclosures in the first place.

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Are We Heading Toward a Nationally Linked Electronic Health-Records Network?
Take the National Health Information Highway Quiz
 

(1) The push for health IT, electronic data interchange, and a national “health information system” was not included in the Clinton Health Plan of 1993 (H.R. 3600).  True or False? (answers below)

(2) The Health Insurance Portability and Accountability Act of 1996 (HIPAA) [Public Law 104-191] includes a section of law titled “Administrative Simplification” that is similar to a provision in the failed Clinton Health Plan of 1993.  True or False?

(3) The Administrative Simplification section of HIPAA encourages the development of a “health information system.” True or False?

(4) The Administrative Simplification section of HIPAA does not include requirements for the electronic transmission of health information. True or False?

(5) President Obama’s economic stimulus law offers Medicare-participating physicians and hospitals temporary incentive payments starting in 2011 for using a certified electronic health record technology, followed by financial penalties starting in 2015 for failure to use such a system. True or False?

(6) According to a 2000 Gallup survey, 95% of Americans say doctors and hospitals should have to obtain individuals’ permission before releasing medical records to a national database. True or False?

Answers: (1) false (2) true (3) true (4) false (5) true (6) true.

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Health Freedom Watch is published by the Insitute for Health Freedom. Editor: Sue Blevins; Assistant Editor: Deborah Grady. Copyright 2009 Institute for Health Freedom.