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Science and Health:
A Matter of Privacy
More on This Story:
Patient Privacy Primer

In this electronic age people are worried more than ever about the prospect of their personal and private information slipping out of their control. In 1996 the Health Insurance Portability and Accountability Act (HIPAA) designed to give people easier access to health insurance, also included a provision for tough new privacy regulation. The Bill's introduction clearly states that the regulations were designed:

  • To protect and enhance the rights of consumers by providing them access to their health information and controlling the inappropriate use of that information:
  • to improve the quality of health care in the U.S. by restoring trust in the health care system among consumers, health care professionals, and the multitude of organizations and individuals committed to the delivery of care; and
  • to improve the efficiency and effectiveness of health care delivery by creating a national framework for health privacy protection that builds on efforts by states, health systems, and individual organizations and individuals.

Are you worried about medical privacy?

Changes going into effect in early 2003 to the practical provisions of the privacy systems mandated by HIPAA have worried some members of Congress, members of the medical profession like Dr. Mark Siegel and privacy advocates. Learn more about a bill addressing these changes and research the issue yourself below.

H.R. 5646, The Stop Taking Our Health Privacy (STOHP) Act of 2002

On October 16, 2002, Representative Ed Markey (D-MA) introduced H.R. 5646, the Stop Taking Our Health Privacy (STOHP) Act to close loopholes in the medical privacy rule created when the Department of Health and Human Services (HHS) weakened the rule this summer. Rep. Henry Waxman (D-CA) and Rep. John Dingell (D-MI) joined Rep. Markey in introducing the STOHP Act. The bill addresses:

1. Consent: The STOHP Act restores the right of patients to decide whether to permit the use and disclosure of their personal health information for purposes of health care treatment, payment and so-called "health care operations". In August, HHS eliminated patient consent in these three important cases, denying patients the fundamental right of deciding for themselves whether their health information can be used or disclosed.

2. Marketing: The STOHP Act ensures that patients are not unwitting victims of marketing materials disguised as objective medical advice. The STOHP Act reverses the change that HHS made to the marketing definition, which permits a pharmacy to be paid by a drug company to send unsolicited mailers to customers recommending they switch to the drug company's brand without informing the customer of the pharmacy's financial tie to the drug company, identifying the source of the communication, or providing the patient the opportunity to opt-out of receiving such communications in the future. The STOHP Act restores these important safeguards, so that patients can make fully informed decisions about their treatment options and say "No" to future unsolicited communications.

3. Disclosures to FDA-regulated entities like drug companies: The STOHP Act narrows the purposes for which personal medical information can be used or disclosed to these entities without patient consent. The STOHP Act limits nonconsensual disclosure to these entities for the purpose of strict public health priorities such as drug recalls. The August modifications created a broader exemption that allows nonconsensual disclosure of patient information to drug companies for a wide range of activities, which may include marketing campaigns.

  • Find out how to track legislation on the Web.

    References: There a numerous sites that provide detail on the HIPAA bill and on the issue of medical privacy. Here are a few to help you investigate the issue for yourself:

  • Department of Health and Human Services (HHS)— HSS is responsible for overseeing medical privacy compliance. Their Office of Civil Rights provides frequently updated information and policy guidance.
  • Educause: Health Insurance Portability and Accountability Act of 1996 — Educause gathers and vets internet reference materials for use in higher education institutions. Their collection on HIPAA includes compliance offices, full text of all relevant legislation and proceedings of the recent government summit on the HIPAA.
  • HIPAAcomply — This reference site for members of the medical, insurance and technology community contains extensive FAQs about the regulations of HIPAA.
  • Medical Privacy Coalition — This medical privacy group offers information about the issue and tracks related legislation.
  • Dr. Siegel in THE NATION — NOW commentator Dr. Mark Siegel addresses viewer questions in a new column.
  • Use our local environment and health resources map to contact health officials in your area.

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