Health Privacy Project

[Peter Marshall <techdiff@ix.netcom.com>]

  The Health Privacy Project is dedicated to raising public awareness of
  the importance of ensuring health privacy in order to improve health
  care access and quality, both on an individual and a community level.

  Without trust that the personal, sensitive information they share with
  their doctors will be handled with some degree of confidentiality,
  people will not fully participate in their own health care. In fact,
  out of fear that disclosure of their medical records may result in
  denial of insurance, loss of employment or housing, and stigmatization
  and embarrassment, people may withhold information from their doctors
  or simply avoid seeking care. As a result, they risk inadequate care or
  undetected and untreated health conditions. In turn, the integrity of
  research and public health initiatives that rely on complete and
  accurate patient data may also be compromised. Thus, protecting privacy
  and promoting health care quality and access are values that must go
hand-in-hand.

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  Congress is under a self-imposed deadline to pass health privacy
  legislation by August 1999, as outlined in the Health Insurance
  Portability and Accountability Act of 1996. If Congress fails to act,
  the Secretary of Health and Human Services must issue regulations by
  February 2000. As these deadlines approach, many health care entities
  are working to develop privacy policies and tools to protect personal
  health information. Thus, either through legislation, government
  regulation, or self-regulation, there will be significant health
  privacy developments over the next few years. Such developments will
  have a profound impact on many aspects of health care and
  health-related endeavors.
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  The Health Privacy Project is a part of the Institute for Health Care
  Research and Policy at the Georgetown University Medical Center. It is
  funded primarily by the Robert Wood Johnson Foundation, the Open
  Society Institute, the Kellogg Foundation, the California Healthcare
  Foundation, and the Glen Eagles Foundation.

         MAJOR INITIATIVES

  Health Privacy Working Group: The Project staffs a Health Privacy
  Working Group comprised of diverse stakeholders in the health care and
  consumer communities seeking common ground on a set of "best
  principles" for health privacy. Members of the Working Group include:
  disability and mental health advocates; health plans; providers;
  employers; standards and accreditation organizations; researchers; a
  pharmaceutical company; and experts in public health, medical ethics,
  information systems, and health policy. A target date for completion of
  the principles and an accompanying report is Spring 1999.

  Consumer Coalition for Health Privacy: The Project initiated and staffs
  the Consumer Coalition for Health Privacy. The mission of the coalition
  is to inform and empower the consumer community, including the disabled
  and those with serious illnesses, to more fully engage in the national
  and local debate on health privacy. Coalition activities include the
  development of background materials, monthly briefings, legislative
  updates and analyses, and opportunities for common initiatives.

  Best Practices: The Project is identifying "best practices" models for
  health privacy and security.

  State Law Compendium: The Project is preparing a practical,
  comprehensive guide to state health privacy laws.

         STAFF

  Janlori Goldman - Director (Bio)           goldmajl@gunet.georgetown.edu
  Zoe Hudson - Policy Analyst (Bio)           hudsonz@gunet.georgetown.edu
  Scott Sanders - Field Director (Bio)       sanderss@gunet.georgetown.edu

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         What You Can Do Now To Protect Your Privacy

  Request a copy of your medical record.
  Currently, 28 states give individuals a legal right to inspect and copy
  their medical records. Even if your state does not provide such a legal
  right, you may be able to inspect and copy your record upon request.

  Request a copy of your file from the Medical Information Bureau.
  The Medical Information Bureau (MIB) is a membership organization of
  more than 600 insurance companies. When applying for insurance, you may
  be authorizing the insurance company to check your records with MIB to
  verify that the information you have provided is accurate. MIB does not
  have a file on everyone. MIB reports are compiled on those with serious
  medical conditions or other factors that might affect longevity, such
  as affinity for a dangerous sport. If MIB has a file on an individual,
  that person has a right to see and correct the file.

  Talk about confidentiality concerns with your doctor.
  Your health care provider should be able to help you understand the
  uses of your health information, and may be able to offer certain
  assurances of confidentiality. For example, some providers keep
  treatment notes separate from the general medical chart to help ensure
  that the most sensitive information remains confidential. Your provider
  may also be able to help you understand the current limits of
  confidentiality, such as what kinds of information he or she is
  required to provide for insurance purposes.

  Read authorization forms before you sign; edit them to limit the
  sharing of information.
  Before you sign any forms find out to whom you are authorizing the
  release of your medical records and for what purpose. You may be able
  to limit distribution and restrict secondary disclosures of the
  information by revising the authorization form. Be sure to initial and
  date your revisions

  Register your objection to disclosures that you consider inappropriate.

  Registering objections may not result in immediate change, but sharing
  your concerns will help to educate your providers, plans, and others
  seeking health information. These entities should be aware that lack of
  privacy impacts how you seek and receive your health care.

  Be cautious when providing personal medical information for "surveys,"
  health screenings and on medical information Web sites.
  Ask how the information will be used and who will have access to it.

  Educate yourself about medical privacy issues.
  The resources page provides a list of informative publications and Web
  sites.

 Institute for Health Care Research and Policy, Georgetown
 University,1999.