Q: Is a nationwide network for immunization records a good idea?

Taken from Insight Magazine - July 27, 1998

Yes: More children will get vaccinated and electronic safeguards will keep data confidential.

No: A boon to Big Brother, this effort will compromise personal liberty and violate privacy.

By CLAIRE BROOME

In the United States. 4 million babies arc born each year. Unlike the four or five vaccinations required when many of us were children, children today need 12 to 16 immunizations by 2 years of age to protect them from 10 diseases. Parents and healthcare providers can use immunization registries to help ensure children are vaccinated on time

Vaccines are one of the most powerful tool modern medicine offers to prevent disease and death. However, at the start of this decade the United States was in the midst of a devastating measles epidemic - 55,000 cases, 11,000 hospitalizations and 120 deaths. The overwhelming burden of this epidemic fell on our youngest citizens our infant children. And, tragically, the United States has had a safe and effective vaccine against measles since 1963.

So what went wrong? A number of things. the worst of which was that we failed our children because we did not have a system de signed to ensure all children have equal access to age-appropriate vaccinations, Since this epidemic. the United States has implemented the Childhood Immunization Initiative, or CII, to help prevent similar disease outbreaks in the future. The CII works to ensure that: 1) children have access to vaccinations; 2) children may be seen hv private physicians or community clinics without the cost of vaccines being the major factor in that choice: 3) community partners support immunization: 4) communities have better ways to measure both immunization and disease levels: and 5) vaccines are safe and effective.

Today, because of the efforts undertaken through CII, immunization levels are at record highs and vaccine-preventable disease cases in the United States are at record lows.

Most parents (and even some physicians) can't keep up with the ever changing recommendations to include new disease-preventing vaccines that make up the routine vaccination schedule for children in the United States.

It's not a lack of science that puts our children at risk from diseases preventable with vaccines: it's a lack of complete and accurate information. In this hectic and very mobile society, healthcare providers and parents think children in their care are up to date when they are not. With access to community and state computerized immunization registries, parents arid physicians can find out immediately during any medical visit at any clinic or emergency room - what shots a child has had, what shots a child may need and what shots, for medical reasons, a child should riot be given.

The Centers for Disease Control and Prevention, or CDC. support state- and community-based electronic immunization registries. There is no national registry (a federal database or computer keeping all children's shot records) and absolutely no plan to create one. However, individual state- and community-immunization registries may choose to exchange information to will help providers give our kids the protection from disease they need.

In response to the need for a coordinated vision among community and state registries, on July 23. 1997, President Clinton directed Department of Health and Human Services Secretary Donna Shalala to work with state and local health officials on developing standards for community and state immunization registries. As a result, the National Vaccine Advisory Committee has created the Workgroup on Immunization Registries, comprised of a wide range of professional. medical and civic organizations.

Since April 1998. this work group has conducted three public meetings - a final public meeting is scheduled for July - to address citizens' concerns regarding privacy and confidentiality along with other issues. These meetings are designed to gather input from professional organizations, healthcare providers and parents in order to develop an immunization registry plan of action that will protect citizens' privacy and improve children's vaccination rates in all states.

The initiative and the public meetings address four critical issues: 1) privacy and confidentiality; 2) the role of the federal government in the development of community and state registries and resource issues; 3) technical and operational challenges; and 4) ensuring provider participation. A major objective in developing state registries is ensuring the absolute need to protect the privacy of patients and providers as we use information technology better to protect children from disease. Confidentiality, no matter whether a document is in a file cabinet or a computer, will be respected. Today. computer technology can give better safeguards for confidentiality than do paper records, such as the ability to encrypt data and maintain an automatic audit trail identifying which person accesses records and when.

In addition, the Health Insurance Portability and Accountability Act of 1996, or HIPAA. mandates privacy protection for patient data. HIPAA does not involve creating a federal database of medical records. It does require that registries adopt high standards for electronic health-information transactions and strict privacy standards for individually identifiable health information. Issues of patient-record confidentiality certainly are not limited to immunization registries. We are an information-driven society, increasingly taking advantage of communication technology. The benefits and risks inherent in this technology are shared by all of us today, with or without immunization registries.

Involving private healthcare providers also is critical to the development of any state- or community-immunization registry. Approximately 68 percent of children receive their immunizations in the private sector, according to a 1996 CDC study. Beyond ensuring their patients are up to date on their shots, private practices can benefit in other ways by participating in immunization registries. They will save time by having consolidated immunization records; decrease their workload in documenting immunizations for schools, camps and day care; reduce patient no-show rates through the recall system and improve managed-care reimbursement for immunizing out-of-plan children.

Registries can help parents keep track of children's immunizations, If a child's immunization records are filed away in a storeroom box or across town at another clinic, chances are slim that time permits checking that child's shot record during the medical visit. Because immunization records are still being recorded with stubby pencils on index cards and are not easily shared by clinics through computers, missed opportunities to give children needed shots are common.

What do local and state immunization registries contribute to parents, physicians and communities? Most importantly, they can keep track of the shots a child has received no matter which doctor or clinic administered them. Registries consolidate scattered immunization records from multiple sources, thus increasing a physician's confidence that he or she is reviewing a complete and accurate account of whether a child needs an immunization - at the time of the encounter.

For example, in Georgia, the immunization registry in public clinics improved the management of immunization records. By consolidating 500,000 separate immunization records into 100,000 complete ones, parents and doctors now have a complete immunization record to make informed decisions about what immunizations are needed.

With immunization-registry technology, communities and states can for the first time offer parents and healthcare providers an automatic reminder when children need immunizations. In addition, registries can offer accurate measurements of immunization levels in a clinic or community. Directors of medical clinics often believe they are immunizing 90 percent of the children seen in their clinics, when assessments show that percentage to be much lower.

Private foundations, physician associations, managed-care organizations and community and state public-health managers are working together to build viable and confidential - immunization registries. In 1996, the American Academy of Pediatrics, or AAP. approved a policy on immunization-tracking systems affirming that, "It is the policy of the AAP, in its role as an advocate for children, to support public and private cooperation in the development of immunization-tracking systems insofar as they benefit children."

In 1991. the Robert Wood Johnson Foundation launched the All Kids Count project, or AKC, to develop vaccine tracking and monitoring systems for preschool children. Other private foundations also joined this effort, resulting in 24 funded projects. William Foege, director of the Task Force for Child Survival and Development which supports AKC, has said: "We have seen an astonishing revolution in computers and communications in the past decade. Technology now is a part of our daily lives. We accept it as natural and normal when we bank, travel, shop, play and work. Unfortunately, public health is a laggard in this revolution - and we must catch up."

Since then, with the help of these partners and others, states and communities have been developing immunization registries. This has resulted in a broad range of implementations that cover different jurisdictions (i.e., states, cities, counties, regions, provider groups, health plans), operate on different computer platforms, use different software and have different core functions. Such variation makes communication and information.

By LISA S. DEAN

Just imagine a woman going through nine months of pregnancy, obeying her doctor's every wish to eat right and stay fit in order to increase her chances of having a healthy baby. The woman takes care not to smoke or be around smokers, takes her vitamins and exercises in order to ensure her baby's good health.

Then the moment of delivery finally arrives. The woman delivers a healthy baby, normal weight, good color, everything checks out. And then, some nurse whisks the child away and vaccinates him against, among other things, hepatitis B The parents never made such a request. Moreover, it subjects the infant to an unnecessary medical risk. So what gives here?

According to the hospital, the nurse shouldn't be fired. As a matter of fact, she should be given a commendation for following the states' applications of a new procedure recommended by the Centers for Disease Control and Prevention, or CDC, and legislated through the Health Insurance Portability and Accountability Act of 1996. or HIPAA.

In 1993, one of the provisions in first lady Hillary Rodham Clinton's healthcare plan included a massive federal database that would track every child from birth in the United States. Mercifully, that provision of the legislation died. However, HIPAA revived that database provision only three years later.

Among other things. HIPAA mandated that a national mechanism be in place to collect medical information on each and every citizen electronically. In addition to that provision, HIPAA also mandated that all healthcare providers, patients and their employers be given a personal health-identifier number and that number be entered as the patient's identification into the state database system, along with their medical information provided by the physician.

In addition to being a blatant violation of doctor-patient privacy, it sets a dangerous precedent for the federal government to be tracking citizens on any subject, let alone the most private of information. Coupled with this dreadful legislation is Health and Human Services Secretary Donna Shalala's mandate that all Social Security numbers belonging to newborns be given to the states for entry into state databases.

This mandate, combined with HIPAA, paves a nice, neat little path to a federalized registry for all newborns, infants and children containing their medical histories, immunization records and so forth that had been confidential between doctor and patient.

How will their mission be accomplished'? Through the CDC's National Immunization Registry Clearinghouse, each state database will be linked to one large database held by the federal government, specifically the Department of Health and Human Services, or HHS. Together the CDC and HHS will engage in tracking all children's - and, inevitably, all citizens' - medical records from birth.

So what happens to the parents who object to Big Brother invading their privacy and that of their children and refuse to enter them into the CDC/HHS immunization registry? According to the National Vaccine Information Center, or NVIC, in Washington, parents already are finding out the answer to that question. "There have been cases where parents of a newborn have objected to the hospital immunizing their baby, only to find out later that the hospital had immunized the baby anyway without their consent," says Barbara Loe Fisher, president and cofounder of NVIC.

Other cases cited by Fisher include parents whose children have been denied health insurance or prohibited from entering public schools because their parents have objected to hepatitis B vaccinations. In the past, vaccinations were mandated by local public-health authorities only after there was widespread understanding and acceptance of the practice. Virtually no one disputed the need for vaccinations against polio, mumps, measles, rubella, etc.

Hepatitis B is an entirely different question. While there was widespread public support for immunizing children against mumps and measles, the same cannot be said for immunization against hepatitis B, a disease with which a large segment of the population has no contact. Moreover, it is one of dozens of new vaccines that are in the process of being manufactured or developed by pharmaceutical companies which stand to make billions from federally mandated requirements.

Little wonder that the companies have formed a behind-the-scenes partnership with Shalala to push these mandates in return for ready-made markets created by federal control of the healthcare system.

But vaccinations never should be mandated by federal authorities. Local authorities have been perfectly capable of handling such policies, and some public-health advocates argue that vaccinations should not be mandated in the absence of a universal understanding and acceptance of the necessity for them. The problem with federal mandates is that they can create a situation where health care can be denied to someone who desperately needs it.

God forbid that anything happen to a child where he has to be taken to the emergency room only to find that because he isn't in the database he doesn't have health insurance and therefore can't be treated. Could hospital personnel be this draconian about playing by the rule book'? Well, consider the tragic case in Chicago recently, where a young boy died because personnel refused to treat him: He wasn't brought in by ambulance as required by hospital rules.

The CDC/HHS database is only one of many tracking systems at the federal level. There are many others at the state level which keep records on citizens' private information. Last year, President Clinton announced the implementation of a new federal database, the National Directory of New Hires, which would collect personal information on every person who was hired for ajob, whether full or part-time after Oct. 1, 1997. That effort - the largest federal roundup of information on citizens in U.S. history - is to be reported to the Department of Labor, but other agencies would have access to it. Clinton claimed the system was designed to track and deter deadbeat parents. However, because no one is spared entry into the database, all citizens who begin new jobs will be treated as deadbeat parents.

On Jan. 1, 1998, after examining the TWA Flight 800 disaster, the Federal Aviation Administration, or FAA, on order of the White House Commission on Aviation Safety and Security, made it mandatory for all commercial airlines to begin collecting information on passengers. Such information would include how far in advance the ticket was purchased, if it was one-way or roundtrip, whether it was paid for with cash or by credit card, hotel reservations, rental car and so forth.

Despite the fact that the crash of Flight 800 was ruled to have been caused by a mechanical failure, the purpose for this profiling system, the FAA claimed, was to ensure passenger safety. Again, another federal agency is collecting information on citizens.

The bottom line is that none of these databases is an isolated system. There is strong evidence that this database, too, will be linked with the others to compile one large file on every citizen in order for the government to track us from cradle to grave.

Currently the Department of Transportation has proposed rules to create a national identification card which is only the beginning of an internal-passport system. It would take all of the information contained in each of the federal databases and place it on our driver's licenses or some other form of identification that would amount to a filing cabinet full of information on every American: medical records, job description and title, income, where he vacations, how he travels, his religion and if he's active in his church or community and in which activities he participates.

It may sound somewhat conspiratorial to conclude that our private lives will not be private if our country continues along its current path. However, it would be false to call it conspiratorial. It is very real and the evidence is being shown to us in every way possible through databases and other forms of electronic monitoring. That's bad enough but, in Los Angeles County, 20 percent of the names in its new-hires database are proving to be erroneous. Parents are being sent bills for hundreds of thousands of dollars in child support on the basis of mistaken identities. Such erroneous enforcement actions could have long term consequences for Big Brother's victims.

People who refuse vaccinations could be charged as child abusers. They can be treated as criminals if they refuse to supply Social Security numbers, which President Franklin D. Roosevelt assured us would never be used for anything other than Social Security. Already people are being denied passage on airlines because the computer mistook them for a bombing suspect. Citizens can be denied new jobs for which they are perfectly qualified simply because the database suggested that they are deadbeat parents.

Law-abiding citizens who need to purchase firearms for their personal protection could be denied that right only because a database suggests -wrongly that they are not eligible to buy a gun.

How many times have you had the experience of ordering something over the phone only to find later that your name has been misspelled or your address is one digit off or your ZIP code entered incorrectly'? Do we want faceless bureaucrats entering incorrect data into a system that ultimately will decide whether we have constitutionally protected rights and privileges?

It is time for the American people to decide what course their country takes. Are we as a nation going to subject ourselves to monitoring systems that are worse than those to which the people of the former Soviet Union were subjected, or are we going to stand up and be counted by taking back our constitutional liberties? Without the help of an awakened people, there is little hope for a free society in America.

April 5, 2008