States Build Patient-Tracking Systems


August 28, 2013


The NSA is not the only agency specializing in surveillance. State government health officials are profiling children and cataloging citizens in massive government databases without the patient's or parent's consent. That's the gist of our new 50-state report, released last week:"Patient Privacy and Public Trust: How Health Surveillance Systems are Undermining Both."

This ground-breaking project took eight years and three data collection strategies to achieve a report that includes data from all 50 states. It will inform the public about the vast state health surveillance systems funded primarily by the federal government. We hope citizens and lawmakers will use the report to advance legislation that purges the databases of data collected without consent, restricts government access to private medical data and restores patient privacy and consent rights.
There are nine key take-aways:
  1. Many Americans are in at least one state government patient-tracking system, either as a patient or as a parent.
  2. There are virtually no consent requirements and few dissent options.
  3. Child Health Profiles are being created by linking various state databases together.
  4. Federal funding drives the establishment and maintenance of state databases.
  5. This is a violation of Fourth Amendment rights against search and seizure.
  6. Disease- and condition-specific databases are increasing.
  7. Patient trust in doctors and hospitals may be harmed once patients realize surveillance is taking place.
  8. The HIPAA privacy rule is actually a disclosure rule, giving states access to data.
  9. State legislators have the power to restore rights to privacy and consent.
To bring patient tracking into sharp focus, our report focuses on four state health surveillance systems found in almost every state:
  • Birth Defects Surveillance
  • Cancer surveillance
  • Newborn screening databases
  • Vaccination/Immunization registries
Individual patient and parent names are collected and stored. Information is accessed regularly. Cancer patients are annually tracked. Child vaccination surveillance systems are expanding to include adult vaccinations. Few people are informed. And most people are not allowed out of the state tracking systems.
At our special report Web page you'll find the following items:
  • Full Report
  • Clickable Map of the United States
  • 51 Charts of Statutes/Rules for Four Surveillance Systems in Each State and D.C.
  • Raw Data Table
Our "raw data" table is filled with information gathered directly from state agencies using a survey tool we created. It includes the date the surveillance system was established and the number of people in each database. These numbers are no longer current because the survey was part of data-collection strategy #1, but the numbers will still amaze. Using the date the database was created and the number of individuals in it at the time of our survey, you can extrapolate the number of individuals tracked today.
Go to Read the report. Be amazed at the raw data. Click on your state. See if your state law requires consent. See how your data is accessed and by whom. See if your data is available to researchers without your consent. You can use our report as a starting point to find out if any of the myriad other state surveillance systems listed on page 2 of the report are in your state.
Use this report to take action. Go to your state legislator and request legislation that purges the state health surveillance systems of all citizen data collected without informed written consent, requires written informed consent for access to private medical records and requires consent for placement of individuals in state surveillance systems. Your legislature can undo the damage of the so-called HIPAA privacy rule by simply requiring patient and parent consent. Real consent, not dissent. Ask your lawmakers to take action.
Remember, he who holds the data makes the rules. Information is power. In the hands of government, it can be used to profile you and your doctor, it can be used to strong-arm physicians into denying access to medical care and it can be used to push objectionable public policy--all without your consent.
There is no freedom if you're under surveillance.
Working to secure health freedom for all,
Twila Brase, RN, PHN
President and Co-founder