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About the CDT Health Privacy Project

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The Center for Democracy and Technology is a non-profit public interest organization working to keep the Internet open, innovative, and free.

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As a civil liberties group with expertise in law, technology, and policy, CDT works to enhance free expression and privacy in communications technologies by finding practical and innovative solutions to public policy challenges while protecting civil liberties.


The CDT is dedicated to building consensus among all parties interested in the future of the Internet and other new communications media. 


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Deven McGraw is Director of the Health Privacy Project for the CDT.


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3 Responses

  1. The [Chief] Privacy Officer

    HIPAA privacy regulations require the designation of a Privacy Officer by each covered entity, to be responsible for “the development and implementation of the policies and procedures” necessary for compliance. Covered entities must also designate a “contact person or office,” usually the Health Information System Department that handles medical records, to be responsible for the administration of such tasks as:

    • creating, posting and distributing the NPP;
    • in facilities with direct treatment providers, securing and recording each patient’s acknowledgement of receiving it;
    • processing authorizations for certain kinds of research, marketing, fundraising, etc;
    • meeting requests for correction/amendment of health records;
    • considering requests for additional protection for, or confidential communications of, particularly sensitive health information;
    • providing information to patients (or staff) who have questions about HIPAA or state privacy protections; and
    • handling any complaints from patients (or staff) about possible HIPAA violations.

    In a large healthcare facility, these responsibilities usually to fall on a middle manager, often one from medical records, and staff support is necessary to handle all these administrative tasks. In a small clinic or practice, Privacy Officer responsibilities may be only a part of a single person’s job responsibilities.

    Ideally, a Privacy Officer will be someone who is (or can quickly become) conversant with both HIPAA’s privacy requirements and those of state law, and who has a background in clinical care, health records management, IT management (particularly security issues), and the compliance and risk management requirements of the Occupational Safety and Health Administration (OSHA), the National Committee for Quality Assurance (NCQA), the Joint Commission on Accreditation of Healthcare Organizations (JCAHO), the Food and Drug Administration (FDA) and the Institutional Review Board (IRB), if your organization conducts clinical research.

    One of the challenges facing the Privacy Officer is to balance existing health policy rules with new regulations that would affect hospital workflow, and provide leadership in recommending change management to comply with the new privacy regulations. The Privacy Officer will also have responsibility for employee training and overseeing daily compliance with regulations. he Privacy Officer should be able to form hospital teams to manage rule enforcement without compromising the organization’s mission statement and patient satisfaction.

    This may seem an impossibly large task until you remember that HIPAA’s requirements for the most part do not displace the existing requirements of state law and professional codes of ethics. Although HIPAA may add to administrative burdens, it should not force major restructuring of your organization.

    Dr. David Edward Marcinko MBA


  2. A Declaration of Health Data Rights

    In an era when technology allows personal health information to be more easily stored, updated, accessed and exchanged, the following rights should be self-evident and inalienable. We the people:

    •Have the right to our own health data
    •Have the right to know the source of each health data element
    •Have the right to take possession of a complete copy of our individual health data, without delay, at minimal or no cost; if data exist in computable form, they must be made available in that form
    •Have the right to share our health data with others as we see fit.

    These principles express basic human rights as well as essential elements of health care that is participatory, appropriate and in the interests of each patient. No law or policy should abridge these rights.

    Source: http://www.HealthDataRights.org


  3. GAO slams HHS on e-prescribing privacy guidance

    A new Government Accountability Office (GAO) report charges that the U.S. Department of Health & Human Services (HHS) has not properly safeguarded the privacy and security of personal health information when electronic prescribing data is used for secondary purposes.

    Click to access 591807.pdf

    The full report is attached above, for your review.



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