Engaging Privacy and Information Technology in a Digital Age (2007) / Chapter Skim
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7 Health and Medical Privacy
7 Health and Medical Privacy
Pages 209-230
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From page 209... ...
7.1 INFORMATION AND THE PRACTICE OF HEALTH CARE Information has traditionally been a central aspect of health care, touching the science, the practice, the equipment, and the business of medicine. Health and medical information is also basic to the interpersonal and institutional relationships of individuals (e.g., involving expectations about sharing intimate health information with close friends or undergoing health exams for employment)
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From page 210... ...
Even if an individual has a primary health care provider, that provider may be a nurse practitioner as well as a physician, and may well be the agent of referral to other specialists rather than the single source of medical care. In turn, the need for medical specialists is directly related to the growth in medical knowledge -- much more is known now about disease and treatment than was understood in the not-so-distant past, and no single doctor can be asked to know all of the complexities and details associated with all of this information or to keep up with the ongoing rapid changes in knowledge.
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From page 211... ...
From the patient's perspective, medical information is often the most privacy-sensitive personal information that they provide. For these reasons, protecting medical privacy has long been recognized as an essential element of any regulatory system in health care.
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• More patient information is being collected by types and in volumes that are intended to aid medical practitioners in predicting future medical conditions with greater accuracy. • Patient information (such as DNA information)
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From page 213... ...
These concerns are enhanced by the fact that the collected medical records provide a storehouse of information that can be used in a variety of ways other than those intended when the information was first collected. These records can also be used for the marketing of particular drugs, or for the denial of medical health insurance coverage.
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The importance of medical information to individuals, businesses, researchers, and doctors explains why this is such a sensitive issue.
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The recent mapping of the human genome, which would have been
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As would be expected from a program staffed by and directed toward professionals in the health care industries, 3 the Ethical Force program reflects a keen awareness of the tensions and requirements of 2 EthicalForce Program, Protecting Identifiable Health Care Informationl Priacy: A Consensus Report on Eight Content Areas for Performance Measure Deelopment, American Medical Association, December 2000, available at http://www.ama-assn.org/ama/pub/category/7726. html.
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From page 217... ...
Based on the concepts of informed consent for the collection and use of information, limitations on the information collected, and limitations on the use to which the collected information is put, each of these principles is seen not as an absolute, but rather as a starting point from which exceptions can be identified. The notion of informed consent is justified by an appeal to "wellaccepted principles of autonomy and respect for persons."4 Informed consent for the collection or use of personally identifiable information should be obtained "whenever feasible"; however, the AMA report on the Ethical Force program then goes on to note that there are circumstances in which such consent is either not feasible or not needed.
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From page 218... ...
In addition, the guidelines recognize that legal requirements from law enforcement or public health agencies sometimes require the release of personally identifiable information without the consent of the individual. In addition, information can be released if it is released in a form that allows only statistical study and not the identification of the individuals whose data are released (Box 7.2 addresses this topic in more detail)
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file. 7.3.2 Legislation -- HIPAA and Privacy The most comprehensive legislative attempt to address the issues around the uses of individual health information is the Health Insurance Portability and Accountability Act (HIPAA)
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By 1999 it was clear that Congress was not going to be able to draft and pass a bill that addressed the privacy and security concerns that had been outlined in the original bill. At that time, the Department of Health and Human Services began drafting regulations designed to improve the privacy of personal health information and the security of such information as it was
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In addition, the HIPAA privacy regulations require that all covered entities (a category that includes all government health plans, private sector health plans and managed care organizations, health care providers who submit claims for reimbursement and payment clear
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Individuals can request copies of health care information kept about them, and can request corrections and amendments of that information. The privacy regulation acknowledges that the burden of receiving informed consent may be unreasonable for researchers attempting to do large-scale studies based on collections of personally identifiable medical information.
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7.3.3 Patient Perspectives on Privacy 7.3.3.1 Notifications of Privacy Policy As noted above, HIPAA mandates a number of privacy protections for personal health information. The concept of informed consent is important to these protections, and thus health care providers are required to 7 Rob Stein, "Patient Privacy Rules Bring Wide Confusion: New Directives Often Mis understood," Washington Post, August 18, 2003, available at http://www.washingtonpost.
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From page 224... ...
Under such circumstances, it is not unreasonable to expect that many people will ignore such notices rather than seek assistance in understanding them. 7.3.3.2 Privacy Implications of Greater Patient Involvement in Health Care Information technology is now beginning to be used as a market differentiator in health care by HMOs and private health care partnerships to allow patients to view some or all of their medical information over the Internet, e-mail their caregivers with questions, or send in their blood glucose readings by e-mail or fax so that the caregivers can evaluate the quality of the patient's disease management.
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However, as health care establishments sought to implement these regulations, they often went overboard and withheld information even when they would have been authorized to provide it. For example, in one instance, and citing HIPAA regulations, a hospital refused to release the medical records of a heart donor on privacy grounds to the physicians treating the heart recipient.10 In other instances, patients and their family members have been unable to access their own personal health information because health care providers were erring on the side of caution in providing such information.
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, and some hospitals argue that HIPAA prevents them from turning over documents that contain information on other people even under these circumstances. 7.3.3.4 Spillover Privacy Implications of Receiving Health Care Services In April 2005, the Target Corporation (operators of a large chain of department stores that often include pharmacies)
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From page 227... ...
This model has been made impractical by changes in how the information itself is stored and how medical treatment is paid for and delivered. Adding in the growing realization that medical information traditionally regarded as private holds promise for changing the way the science of medicine can be conducted, it is clear that there are additional pressures on the traditional notions of medical privacy and that the rules of practice relevant to medical information will continue to evolve.
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From page 228... ...
Insurance companies, which are more and more the payer of the costs of medical treatment, provide yet another subcontext, given that it is the rare person in the United States who is able to obtain consistent medical care without the use of these insurance companies and abiding by their sometimes-onerous information requirements. To illustrate, consider the issue of privacy as it relates to the availability of health insurance.
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wants to sign up for health insurance. The application consists of a copy of her full files from prior insurance providers and doctors, a detailed medical history, and an interview as well as a physical examination that includes blood and urine tests.
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There is a certain urgency for making these decisions, as every day the techniques of medical information gathering and sharing improve. Although we now have some handle on the notion of what constitutes personal health information, a time will come when current notions surrounding those ideas will not be adequate.
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