CCHF Research Shows State Cancer, Vaccination Registries Are Actually Surveillance Systems




For Immediate Release

August 28, 2013



Deborah Hamilton, Hamilton Strategies, 215.815.7716, 610.584.1096,


CCHF Research Shows State Cancer, Vaccination Registries Are Actually Surveillance Systems

50-State Report Reveals That States are Secretly Building Private Medical Registries to Tie into National Surveillance Networks

ST. PAUL, Minn.— For the past eight years, Citizens’ Council for Health Freedom has been researching health departments in all 50 states to find out how they use funding from the federal government to obtain and store citizens’ private medical information—in most cases, without patients’ consent.

CCHF’s report, “Patient Privacy and Public Trust: How Health Surveillance Systems Are Undermining Both,” includes details about the private patient data that states collect and maintain. One alarming fact, says patient advocate and co-founder of CCHF Twila Brase, is that registries that supposedly collect info on vaccinations and cancer diagnoses are actually avenues for private patient data to be funneled to government agencies.

“A state vaccination registry seems quite benign,” Brase said. “However, vaccination registries—now popularly called immunization registries or, more recently, immunization information systems—are viewed by many in health care as platforms for comprehensive health surveillance on the American public.”

In 1996, the Health Resources and Services Administration (HRSA) at the U.S. Department of Health and Human Services released a strategy statement recommending the development of a “Maternal and Child Health Information System.” In 1998, the Genetics Services Branch of HRSA established grants to develop an integrated Child Health Information System (CHIS). The Public Health Informatics Institute notes that the concept of the Child Health Profile was developed by HRSA with the goal to serve as a consolidated record that would be available to certain authorized users.

A few years later, the plan started to become reality. In 2001 and 2002, federal officials visited seven states, then drafted a sourcebook of five “lessons,” including one called “Data are for Sharing.” By 2003, a federal work group was convened, resulting in 19 principles and 30 functions of CHIS, including:

  • Establishing a government health record for each infant within two weeks of birth.
  • Establishing a unique identifier for or a process to individually identify all children that all participating programs can use to cross-link information.
  • Tracking the individual from screening through confirmation of diagnosis and initiation of therapy.
  • Tracking long-term follow-up care into adulthood.
  • Recording additional information as it becomes relevant to the health of the child and the programs participating in the data system.

Much like vaccination registries, state cancer registries, sometimes called tumor registries, have a long history. In 1926, a Massachusetts doctor began a bone sarcoma registry, one of the earliest registries established for a specific type of cancer. That same year, the first hospital-based cancer registry was established in New Haven, Conn. Registries from there grew and grew, many for the intent to filter patient information to government agencies.

For nearly a decade, Brase has researched the medical data that states collect on Americans—from birth to death—on everything from birth defects to cancer diagnoses. Brase’s report contains extensive information on the types of health data collected by states, including but not limited to: hospital discharge data, stage of the disease at diagnosis, date of initial treatment, course of treatment, as well as ADHD, vaccinations, cancer, birth defects, newborn screenings, autism, diabetes, asthma, sexually transmitted diseases, strokes and cardiovascular disease, Alzheimer’s, ER visits, obesity and body mass index. Other personal information collected and stored includes the patient’s name, address, sex, race, ethnicity, date of birth, Social Security number and occupation.


Twila Brase, a public health nurse and health freedom advocate, has been called one of the “100 Most Powerful People in Health Care” and one of “Minnesota’s 100 Most Influential Health Care Leaders.” She has been interviewed by CNN, Fox News, Minnesota Public Radio, NBC Nightly News, NBC’s Today Show, NPR, New York Public Radio, the Associated Press, Modern Healthcare, TIME, The Wall Street Journal, The Washington Post and The Washington Times, among others. Brase shares health care-related news and commentary with the American public in her daily, 60-second radio feature, Health Freedom Minute, which airs on nearly 350 stations daily, including the 150-station American Family Radio Network and the 80-station Bott Radio Network. During these daily features, listeners can learn more about the agenda behind proposed health care initiatives, the ramifications of proposed policies and actions that can be taken to protect their health care choices, rights and privacy. Health Freedom Minute is sponsored by the Citizens’ Council for Health Freedom, a patient-centered national health freedom organization based in St. Paul, Minn. CCHF supports patient and doctor freedom, medical innovation and the right of citizens to a confidential patient-doctor relationship.

For more information or to interview Twila Brase, president and co-founder of Citizens’ Council for Health Freedom, contact Deborah Hamilton, Hamilton Strategies, 215.815.7716, 610.584.1096,