25 national organizations urge privacy in e-prescribing

A press release I just received by e-mail:

Twenty five organizations, including the ACLU, the Republican Liberty Caucus, the American Council for the Blind and the National Association of Social Workers joined forces via the Coalition for Patient Privacy to urge Congress to include privacy protections in any federal electronic prescribing legislation.
Read the Coalition’s letter to Congress here:

What is scary about e-prescribing? Much more than you might think. Today, plenty of private corporations and employers have access to Americans’ private prescription use that includes individually identifiable data. Deborah Peel, MD, Founder of Patient Privacy Rights and leader of the Coalition explains the need for privacy with e-prescribing, “Our current system allows every prescription in the United States to be data mined and sold. This has been the reality for over a decade. You cannot keep a prescription private in the U.S. or stop your data from being sold, even if you pay cash.” This practice is completely compliant with the Health Information Portability and Accountability Act (HIPAA).

While e-prescribing is attractive to many, Americans do not want their private prescription information data mined and used without their permission. Many Americans would be quite alarmed to discover their employer and others know they take an anti-anxiety medication or that they are being treated for an STD. West Virginia is a perfect example: when state employees recently learned that Express Scripts was selling their prescription records to data miners, they were outraged. Express Scripts promptly agreed to stop this practice when faced with losing 200,000 customers.

Some argue the e-prescribing bills do not change anything. While the fact that the U.S. has a systemic, extensive system for prescription data mining and sale is NOT a secret anymore, the
Coalition argues that now is the ideal time to end this unethical use of our private prescription records. When you know something bad is happening, that is the time to stop it. “Would you sit there and watch a house burn down, or let somebody bleed to death before your eyes and do nothing? Or would try to stop those harms?” asks Peel. “Now that we know beyond a shadow of a doubt that the systemic theft and misuse of personal data is occurring, why wouldn’t we do all we can to stop it now, starting with e-prescribing?” Members of the Coalition for Patient Privacy actually see this debate as a golden opportunity to ensure both progress and privacy.

The Coalition for Patient Privacy recommends the following basic principles in any e-prescribing legislation:

  • include a right to health information privacy (the right to control access to personal health information);
  • require that any prescription data transmitted via e-prescribing be used only for the express purpose of prescription filling and submitting the necessary codes to the insurer for payment;
  • include a provision requiring prompt notification of privacy breaches;
  • include a provision that creates meaningful penalties and enforcement mechanisms for violations detected by patients, advocates and government regulators;
  • include provisions enhancing the security of e-prescription data such as encryption when data is transmitted, stored or retained in any storage and retrieval systems, including access devices,
  • readable cards or other methods;
  • ensure physicians who decline to use e-prescribing are not penalized;
  • ensure transparency by requiring annual reporting to patients listing everyone who has accessed their prescription data;
  • include a provision ensuring stronger state privacy laws are not pre-empted;
  • require reporting of privacy complaints to the Centers for Medicare and Medicaid Services (CMS);
  • require CMS to provide an annual report to Congress on privacy complaints made; and
  • ensure prescription technology allows those with disabilities to be able to use e-prescribing tools efficiently and effectively.

The Coalition for Patient Privacy:

American Association of People with Disabilities
American Association of Practicing Psychiatrists
American Association of Small Property Owners
American Civil Liberties Union
American Council for the Blind
American Psychoanalytic Association
Citizens for Health
Confederation of Independent Psychoanalytic Societies
Consumer Action
Consumers for Health Care Choices
The Cyber Privacy Project Electronic Privacy Information Center
Equal Justice Alliance
Fairfax County Privacy Council
Gun Owners of America
Just Health
Liberty Coalition
The Multiracial Activist
National Association of Social Workers
National Center for Transgender Equality
Pain Relief Network
Patient Privacy Rights
Private Citizen, Inc.
Republican Liberty Caucus
Tolven, Inc.

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