Health Freedom Watch
February 2009

• Economic Stimulus Bill Mandates Utilization of “an” Electronic Health Record for Every American by 2014
• Congress Needs to Add Opt-out and Consent Provisions to Health IT to Ensure Quality Health Care
• Notable & Quotable: HHS’s Comments on Privacy and Quality

Economic Stimulus Bill Mandates Utilization of “an” Electronic Health Record for Every American by 2014

The Institute for Health Freedom (IHF) is warning the public that the economic stimulus bill mandates the federal government to plan for each American to use “an” electronic health record (EHR) by 2014—without opt-out or patient-consent provisions.  We’ve updated our news release on this important issue, with links to bill text (see: http://forhealthfreedom.org/Publications/Privacy/EconomicStimulusAndPrivacy4.html).

IHF hopes you’ll continue voicing your opinion about this important issue to national policymakers, your family and friends, and the media.  Please help spread the word by commenting and placing a link to our update at blogs and online news sites.  Government Health IT reports that:

• the Senate is expected to approve its version of the stimulus bill (which includes health IT) by February 10;

• then the House and Senate will reconcile their two bills; and

• Congress is aiming to deliver a final bill to President Obama by February 16.

“It’s important to note that Congress is getting mixed messages on the medical privacy provisions in the stimulus bill,” says Sue Blevins, IHF president.  “The bottom line is that if YOU want to control the flow of your personal health information, your consent to share the information must be a prerequisite and you must have the right to withhold permission.  And neither the current federal (HIPAA) privacy rule nor the economic stimulus bill guarantees Americans the right of consent.”

Source: “Economic Stimulus Bill Mandates Electronic Health Records for Every Citizen without Opt-out or Patient Consent Provisions,” Institute for Health Freedom, (updated) February 9, 2009: http://www.forhealthfreedom.org/Publications/Privacy/EconomicStimulusAndPrivacy4.html.

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Congress Needs to Add Opt-out and Consent Provisions to Health IT to Ensure Quality Health Care

As Congress considers ways to cut costs and improve the quality of health care, many see electronic health records (EHRs) as an efficient means for achieving those goals.  However, without providing for opt-out and consent provisions, EHRs could lead to reduced quality and increase the costs of health care. This is because studies show that without true privacy rights, people won’t be forthcoming about personal details and incur further expenses in getting, or avoiding, care.  

Richard Sobel, former senior Research Associate in the Program in Psychiatry and the Law at Harvard Medical School, examined this issue in a 2007 Hastings Center Report article “The HIPAA Paradox: The Privacy Rule That’s Not” (the following are excerpts): 

• “HIPAA is often described as a privacy rule. It is not. In fact, HIPAA is a disclosure regulation, and it has effectively dismantled the longstanding moral and legal tradition of patient confidentiality.” 

• “A 1999 California HealthCare Foundation (CHCF) study found that one in seven patients (15 percent nationally) was taking at least one of six possible measures to hide information from their providers, including going to different doctors or paying out of pocket.” 

• “A 2005 follow-up that asked only four of those six questions found one in eight patients (13 percent on average) were practicing ‘privacy-protective behaviors.’ If all six questions [asked in the 1999 survey cited above] had been repeated, about 20 percent to 22 percent would have indicated that they pursued privacy protective behaviors.” 

• “As more people become aware that they do not control their medical information under HIPAA, the number avoiding treatment is likely to grow.” 

• “Congress should incorporate a patient consent provision into any legislation on electronic health information.” 

While Congress will be hearing about potential cost-savings from EHRs, it should seriously consider the costs of not allowing Americans to opt out of a national EHR system and the lack of patient consent: more patients will withhold private information as they lose trust in the confidential doctor-patient relationship and lose control over the widespread disclosure of their most personal information. The additional expenses could exceed by multiples the comparatively small estimated cost of maintaining (or returning consent), for instance, to the HIPAA regulations. So, for both ethical and financial reasons, confidentiality and consent are both cost-effective and essential for improving the quality of health care.

Source: “The HIPAA Paradox: The Privacy Rule That’s Not,” Hastings Center Report, by Richard Sobel, July-August 2007: (http://www.pipatl.org/people/sobel/theprivacyrule.pdf).

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Notable & Quotable: HHS’s Comments on Privacy and Quality

The U.S. Department of Health and Human Services (HHS) has previously acknowledged the need for enhanced privacy rights with the utilization of electronic health records (EHRs).  Following are notable comments that HHS released with its December 2000 version of the HIPAA privacy rule: 

• "The electronic information revolution is transforming the recording of health information so that the disclosure of information may require only a push of a button. In a matter of seconds, a person's most profoundly private information can be shared with hundreds, thousands, even millions of individuals and organizations at a time." [Emphasis added.] 

• "In short, the entire health care system is built upon the willingness of individuals to share the most intimate details of their lives with their health care providers. The need for privacy of health information, in particular, has long been recognized as critical to the delivery of needed medical care. More than anything else, the relationship between a patient and a clinician is based on trust.…Privacy violations reduce consumers' trust in the health care system and institutions that serve them. Such a loss of faith can impede the quality of the health care they receive, and can harm the financial health of health care institutions." [Emphasis added.] 

• "Patients who are worried about the possible misuse of their information often take steps to protect their privacy. Recent studies show that a person who does not believe his privacy will be protected is much less likely to participate fully in the diagnosis and treatment of his medical condition....[O]ne in six Americans reported that they have taken some sort of evasive action to avoid the inappropriate use of their information by providing inaccurate information to a health care provider, changing physicians, or avoiding care altogether." [Emphasis added.]

Source: Federal Register, (Volume 65, Number 250), December 28, 2000, pp. 82465-82468: http://www.forhealthfreedom.org/BackgroundResearchData/2000_Final_HIPAA_Rule.pdf.

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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.