Health Freedom Watch
(Email newsletter published by the Institute for Health Freedom)
HHS Asks for Comments on Plans for Electronic Health Records and Genomic Medicine
Submit Comments by February 5!
The U.S. Department of Health and Human Services (HHS) is requesting public input on its plans for facilitating a nationwide system of electronic health records (EHRs) and the use of genetic information in medical care and research, among other issues. Comments must be submitted by February 5, 2007.
In its Federal Register notice HHS stated that many private and government groups are preparing to use the forthcoming electronic medical-records system for collecting and utilizing genetic data. The Federal Register announcement includes the following excerpts [see link below to read the notice in its entirety]:
- “The application of interoperable electronic information technologies (IT) in the health care setting provides new opportunities to collect and analyze information about diagnostic and therapeutic interventions, as well as health care outcomes....”
- “Occurring in parallel with the advances in health IT are advances in molecular and genetic medicine....The ability to integrate new scientific knowledge, especially our growing understanding of the human genome, into the health care setting in an efficient and timely fashion will rely on robust, reliable and secure information sources in electronically interoperable systems. Many public and private organizations are engaged in the planning for future collections and integration of health data for this purpose....”
Citizens wishing to comment should consider the following issues:
- The existing federal medical-privacy rule does not give individuals the final say in who has access to their medical/genetic information. Thus, facilitating EHRs would make it easier to share medical/genetic data without individuals’ consent and therefore diminish Americans’ health privacy.
- Individuals do not have a right to sue under the rule if their privacy is violated. In fact, on November 13, 2006 the U.S. Court of Appeals for the Fifth Circuit, in Acara v. Banks, confirmed that private litigants may not enforce the rule. The only recourse is to file a complaint with HHS.
The bottom line is that the federal government is moving full steam ahead in fostering a national EHR system without ensuring that individuals have the final say in determining who has access to their personal health information—including genetic information. Sigrid Fry-Revere, director of bioethics studies at the Cato Institute, warns, “The U.S. healthcare system is suffering from a serious trust crisis and mandating the collection of medical data may very well add to that crisis....”
Public comments must be submitted to HHS on or before February 5, 2007.
Electronic responses are preferred and should be sent to: PHCRFI@hhs.gov
Written responses should be mailed to:
Attention: Personalized Health Care RFI
Department of Health and Human Services
200 Independence Avenue, S.W.,
Washington, DC 20201
HHS requests that responders follow these instructions: Any information you submit will be made public. Do not send proprietary, commercial, financial, business confidential, trade secret, or personal information that should not be made public. The submission of written materials in response to the RFI [Request for Information] should not exceed 75 pages, not including appendices and supplemental documents. Responders may submit other forms of electronic materials to demonstrate or exhibit key concepts of their written responses. For further information, contact: Dr. Gregory Downing, Personalized Health Care Initiative, (202) 260–1911.
- “Request for Information (RFI): Improving Health and Accelerating Personalized Health Care Through Health Information Technology and Genomic Information in Population and Community-Based Health Care Delivery Systems,” Federal Register (Vol. 71, No. 211), November 1, 2006, pp. 64282-4: http://a257.g.akamaitech.net/7/257/2422/01jan20061800/edocket.access.gpo.gov/2006/pdf/E6-18371.pdf and Federal Register (Vol. 71, No. 239), December 13, 2006, p. 74914 (re: extension of comment period): http://a257.g.akamaitech.net/7/257/2422/01jan20061800/edocket.access.gpo.gov/2006/pdf/E6-21146.pdf
- “HHS Considering Nationwide System of Electronic Healthcare Records,” by Sigrid Fry-Revere, Cato Institute, December 15, 2006: http://www.cato-at-liberty.org/index.php?cat=13&submit=GO
- “About Health Care (HIPAA Privacy Rules),” Mcglinchey Stafford PLLC, December 5, 2006: http://www.mcglinchey.com/publications/newslettermonth.asp?article=1008&issue=12&vol=2006
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Americans Are Concerned about Privacy of Electronic Records, Survey Finds
Americans’ top concern about electronic health records (EHRs) is the potential misuse of their personal data, according to a national survey conducted on behalf of the Markle Foundation. Respondents were asked how concerned they would be about the following matters if an online network provided people with access to their medical information:
- Identity Theft: 92 percent (80 percent very concerned; 12 percent somewhat concerned).
- Access by Marketing Firms: 89 percent (77 percent very concerned, 12 percent somewhat concerned).
- Access by Employers: 74 percent (56 percent very concerned; 18 percent somewhat concerned).
- Access by Health Insurers: 79 percent (53 percent very concerned; 26 percent somewhat concerned).
Are these concerns unfounded? The Wall Street Journal recently reported that the Department of Health and Human Services (HHS) fielded 23,896 complaints related to the medical-privacy rule between April 2003 and November 30, 2006. However, HHS has not taken any enforcement action against hospitals, doctors, insurers, or anyone else for rule violations, according to the Journal.
The Journal also reported a case involving disclosure of a woman’s psychotherapy notes without her permission. Patricia Galvin sought psychotherapy at a hospital for issues relating to relationships with family, friends, and coworkers. Several years later, when she sought disability benefits for chronic back pain resulting from a car accident, her insurer turned her down, citing information from her psychologist’s notes. She was appalled to discover that her notes were mixed in with her general medical records. The federal medical privacy rule allows the disclosure of medical records without permission for activities related to treatment, payment, or health-care operations; there is no special protection for psychotherapy notes that are combined with medical records. Last summer, HHS rejected the complaint filed by Ms. Galvin, saying the hospital where she sought psychotherapy hadn’t broken any rules.
Meanwhile, Americans stress that they want access to their own electronic records. The Markle Foundation survey found that:
- 91 percent say it is important to see what their doctors put in those records to ensure that they understand the patient’s situation.
- 84 percent want to be able to access their records to check for mistakes.
- 84 percent said that when switching doctors they would want electronic copies of their medical records.
The Markle Foundation report concludes, “These survey results indicate most Americans are interested in accessing personal health information electronically and in ensuring that their health care providers have access to their information. Majorities express strong interest in using electronic personal health information to engage more and have more control over their care, which could affect both the quality of care they receive and the overall cost of health care. Yet, data suggest this interest is contingent on the extent to which the government and others establish sufficient privacy and confidentiality protections.” The survey among 1,003 Americans nationwide was conducted by Lake Research Partners (LRP) and American Viewpoint between November 11 and 15, 2006.
- “Survey Finds Americans Want Electronic Personal Health Information to Improve Own Health Care,” Markle Foundation, December 7, 2006: http://www.markle.org/downloadable_assets/research_doc_120706.pdf
- “Medical Dilemma: Spread of Records Stirs Patient Fears of Privacy Erosion,” by Theo Francis, Wall Street Journal, December 26, 2006.
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Is Insurers’ Plan to Give Patients Personal Health Records a “Wolf in Sheep’s Clothing”?
According to Patient Privacy Rights, the plan by America’s leading insurers to provide Personal Health Records (PHRs) is "a wolf in sheep's clothing." America’s Health Insurance Plans (AHIP) and the Blue Cross and Blue Shield Association (BCBSA) recently announced a plan to offer free PHRs to enrollees. “Insurer-provided electronic personal health records held in a data bank that the insurers control will be used primarily to benefit insurers, not patients,” said Deborah Peel, MD, founder and chair of Patient Privacy Rights.
“The last place on Earth where patients want to keep their complete medical records is in the hands of their insurers. But that is exactly what AHIP and BCBSA are proposing” she said. Patient Privacy Rights strongly advises all Americans "not to participate in any personal health record databases or data banks until Congress passes a law saying that consumers own their health records and gives them the right to control who can access their health records."
However, Sheldon Richman, editor of The Freeman, published by the Foundation for Economic Education, asks, "Why shouldn’t an insurer who is on the hook for your medical bills not have access to your medical information? Isn’t there something wrong in people demanding that insurance pay for everything, while objecting when the insurer wants full information about the client’s medical status?" He goes on to comment, "If insurers are barred from this information, two things will happen: companies will leave the market and prices will go up. Then people will demand that the government should do something about it. Ironically, this aspect of the 'privacy' movement will facilitate the advance to national health insurance. That's a scary thought."
How can Americans ensure their right to maintain a confidential patient-doctor relationship with the growth in insurance coverage? And how would government-mandated health insurance affect this relationship? These are important issues for all Americans to consider as the nation debates universal health insurance in 2007.
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Health Freedom Watch is a monthly email newsletter published by the Institute for Health Freedom (IHF), a national nonprofit, educational organization whose mission is to bring the issues of personal health freedom to the forefront of the American health-policy debate. IHF monitors and reports on national policies that affect citizens' freedom to choose their health-care treatments and providers, and to maintain their health privacy--including genetic privacy. IHF is not affiliated with any other organization.
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