Janae Sharp examines the poor state of immunization interoperability and what it means for healthcare.
I recently saw a Facebook account belonging to an 8-day-old baby who contracted measles. In a comment, one user wrote, “I wish insurance companies wouldn’t have to pay for the care of children that aren’t vaccinated.” The comment struck me because I was once a “conscientious objector” to immunization — but not for the reasons you might think.
For me, discussion of immunization and what companies and politicians should do brings up many questions about logistics: How are we going to ensure that the data we have on who is vaccinated, and for which conditions, are good? What data structures are in place to regulate immunizations? We need individual immunization information about when and if each vaccine was delivered, along with a way for other entities to verify that data. Schools want to know. Insurance companies need to know if they pay for vaccinations, and timelines need to be illustrated for the individual. There are currently a few nationwide immunization registry initiatives, but there are no mandates and no complete and consistent records for all the parties that should be involved. If insurance companies weren’t liable to pay for unvaccinated children, we would need to eliminate all loopholes and exceptions in our current registry system.
The American Immunization Registry Association is a leader in promoting easy access to immunizations and records. But there is still much work to be done. It seems to me that, if lawmakers were to enact legislation to mandate immunizations, we would need better accountability to track all vaccines and their efficacy across populations.
This year we are having my 20-year high school reunion. I might consider going — but it is in Clark County, Washington, where I grew up. Clark County’s Slavic community, a linguistically and culturally isolated segment to which a number of my high school classmates belonged, has experienced 72 cases of measles in recent months.
Everyone who participates in the vaccination debate should realize that our health IT infrastructure and policies are adversely impacting lives. The way in which vaccines are tracked is inconsistent, and children are the ones who suffer as a result. The need for improvement is also affecting Clark County directly.
I was interested to learn that a few pilot projects exist to facilitate consumer access to vaccine records. One of them is for Washington and would presumably help some of the people affected by the Clark County outbreak. The website My Immunization Record allows patients and families to download and print their own vaccine records. This is useful for people like me, who might lose the printout as soon as we leave the physician’s office, or for people whose first language is not English, so they have access to documentation for future visits with healthcare professionals.
I lived in Philadelphia during the period in which my daughter had some of her first immunizations. A few cities, such as Philadelphia, New York City and San Diego, have citywide registries only, meaning that my kid’s vaccine records were not part of the state registry. Prior to Philly, I lived in the Scranton area, where my child’s physician retired before transitioning to electronic health records. My daughter’s vaccine records seemed littered across multiple data registries and file boxes across the U.S.
In some states, like Utah, where I live now, most immunization records are maintained at the state level — so if you move or change providers, patients can obtain those records. In other states, like Pennsylvania, where some of my children were born, the vaccine registry appeared to be less developed. As in, only the physician has the records.
Data infrastructure for vaccinations is actually well-developed in the U.S., so the technology exists to alleviate many of these problems. Nevertheless, confusion about records starts when patients and jurisdiction cross.
If you give birth in a state other than where your physician practices, those records will not automatically come with you back to your home physician’s office. If you move across jurisdiction lines, those records do not come with you. Records storage, as a general rule, follows the regulations for the state in which a given physician practices, not where the patient lives.
There is no national vaccine registry with all records, but there are some movements to consolidate data. For instance, the Immunization Gateway Hub allows physicians to get access to records more easily across state lines. However, the way health data are stored varies across every physician practice and health system, and immunizations are no exception. What does that mean? Well, it means that, in effect, states’ rights and regulations control what happens to your vaccination records and the requirements for them. This interoperability challenge is explained well on the American Immunization Registry Association website:
“When political barriers prevented the development of a national immunization registry, independent jurisdictions were left to develop their own systems. While this was a step in the right direction, it presented limitations for interoperability since the immunization information systems (IIS) were designed to solve local challenges.”
When we left Pennsylvania to move closer to family, I had paper copies of all my childrens’ shot records. I think. Looking back, I realize I might not have actually had the information because, somewhere in the move, I lost the paper. So, our new Utah-based pediatrician wrote to my children’s Scranton-based doctor requesting my children’s records, but the old physician had passed away or retired, and after several requests, we got no information. Meanwhile, I was busy trying to adjust the family to life in a new state, and I neglected to follow up.
Then came school registration. To enroll your child in kindergarten, you need shot records. For whatever reason, I had the right records for my oldest child, but my second child also had most of his vaccines in Pennsylvania, and I couldn’t get the records.
I explained the problem at my kids’ school, and the staff said the easiest way around it if you have missing records — or a child with medical issues precluding regular immunization or an adopted child — was to go to the health department and become an “objector.” As I recall, I had to pay a fee. At the health department, I remember feeling apologetic. I thought they would judge me, but I didn’t want to vaccinate my kids for what I knew would be a second time just to get a stamp. The school, meanwhile, tried to look up the records in the Pennsylvania state registry, but of course, there were no records there.
Every year I had to fill out another form. I really wasn’t sure what the right thing to do was in this situation, so we did the best we could.
Do you know how I finally found my kids’ records? A friend called the Scranton-based physician’s office on my behalf. The woman on the phone explained (under no uncertain terms!) that my children’s pediatrician had passed away and that she was not in charge of digging up old shot records. However, my friend was more persistent than I had been. She refused to get off the phone until the woman got up, found those shot records (turns out they were there in the office’s archived files all along) and sent them to my children’s school.
In the end, the person who located my kids’ immunization records was someone who understood that persistence matters and was willing to dig in and not budge. The situation reinforced the idea that a lack of clear accountability for records means that there are no consistent expectations of record-keeping.
A patient’s ability to access their records is dependent on the saavy of their network. We don’t all have a friend who can convince an office manager with no motivation to immediately get up and get records in some faraway, inconveniently-located box.
I’m not the only one who faces obstacles from vaccination records. Children in foster care frequently receive the same vaccines more than once. This is a waste of money. Some states have an exemption for foster children in order to more easily enroll them, as well as for children of armed services members. Realistically, any child who moves is at risk of facing records issues.
In Texas, there is a law that bars foster children from getting vaccinations. Recently, there have been moves to change these rules after the deaths of several children. This regulation brings up many questions about public health best practice and who is responsible for obtaining medical care for children. If children are wards of the state, should they be vaccinated? Texas currently says no. New Jersey says, “Let the physician decide.”
“Intimately personal medical decisions should not be made by government,” Ron Paul said in the debate over the appropriateness of government-mandated immunizations. The battle between those who believe vaccines are safe and those who don’t has transcended into a debate over how much influence the government should have in our lives and to what extent communities and families should have control over personal medical decisions. However, the obvious fact is that children suffer the consequences of overly loose regulations.
Debates about vaccination are likely to remain passionate; the issue is an uncomfortable inverse relationship between people’s definitions of public health and personal freedom. But even if there are rigid requirements about how vaccines are implemented tomorrow, our data infrastructure still has some work to do. The exceptions — families who, for whatever reason, fall through the cracks of the various systems in place — are common enough to disrupt the efficacy of our current immunization infrastructure. We need sufficiently developed data structures so that vaccinating no longer seems like an onerous responsibility to families, but instead a streamlined and effective life-saving measure.
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