Letter: Government must protect patient information

The founder of Patient Privacy Rights says data security should go hand-in-hand with individuals’ legal control over their personal health information.

Regarding “GAO: Common desktop configuration holds promise for better security”: Why is the Health and Human Services Department pressing forward and funding a national health information infrastructure without effective physical, technical and administrative measures to ensure that our data is secure and without technical measures or a strong federal law to ensure our control of the most sensitive data on Earth: Personal health information?

This report points out that the federal government — and surely state and local governments — have not secured the databases they hold with our sensitive personal data. Nor has Congress restored our legal rights to control access to personal health information, which were eliminated when HHS amended the Health Insurance Portability and Accountability Act in 2002.

The TRUST Act (H.R. 5442), introduced Feb. 14 and sponsored by Reps. Edward Markey (D-Mass.), Rahm Emanuel (D-Ill.) and Lois Capps (D-Calif.), would guarantee that the control over health information that patients have had for centuries would be restored.

Since 2006, Patient Privacy Rights and the bipartisan Coalition for Patient Privacy — representing seven million Americans — have been asking Congress to restore our legal and ethical rights to control access to our personal health data.

But we cannot have data privacy without effective security measures in place. Hackers and unauthorized users of our data must be stopped from getting into health IT systems.

We want the federal government to enact smart laws and require the use of smart technologies to ensure that the electronic health system is private and secure. There is no need to choose between reaping the benefits of health IT and guaranteeing our privacy.

If we do not build health IT systems that ensure consumer control over data and have state-of-the-art data security, the health IT system will fail because people won’t trust it enough to participate.

No one will seek treatment when everything about their treatment can be known and used against them by employers, insurers, banks and schools.

Congress should protect Americans and stop the data-mining industry from illegally and unethically stealing our personal health information.


Dr. Deborah C. Peel
Patient Privacy Rights


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