Health Registries, Trust Me You're Gonna Need One!

Motivated by the terrible event in New Palestine, Ohio, and others, I was recently asked to present on the subject of health registries and their importance by some colleagues with the National Fire Protection Association. My little speech was well received, and, hopefully, helpful.  In a follow up conversation, I was encouraged—which is a kind word for compelled—to reproduce my points online.

I was also cautioned to “be brief.” That’s the hard part for me, but here goes.

What are they?

National Committee on Vital and Health Statistics defines a registry as:

A registry is an organized system for the collection, storage, retrieval, analysis, and dissemination of information on individual persons who have either a particular disease, a condition (e.g., a risk factor) that predisposes to the occurrence of a health-related event, or prior exposure to substances (or circumstances) known or suspected to cause adverse health effects.

Why it matters.

Some health effects take time. A great example of this is found in the best and biggest health registry, the 9/11 Health registry that covers victims, responders and other workers that were at Ground Zero, and follows, and most importantly, programmatically and financially supports them as certain health problems arise. It is a huge undertaking and the right thing to do. It also has not been easy. It takes time, effort, and money.

Other challenges

There is no compulsion to do them. There are no regulations that require that one be established when an event occurs. There also is often a lot of interest in NOT doing them. Generally, when a chemical, an industrial, or hazardous material release or event occurs and harm is established, an entity will be found responsible. That is often politically, economically, and socially uncomfortable.  And some of those entities have a lot of influence.

Who can make one happen?

The power lies with government. Federal agencies like Health and Humas Services, DHS, FEMA, EPA, USDA, and others have certain powers to establish medical surveillance. States have them as well. Even at the local level there are some mechanisms depending on where you live and local law.

So, what can we do?

Well, you can speak to your elected officials. Advocate that law or regulation be established. I recommend that the starting point be with your fire departments, Hazmat teams, your health department, and office of emergency management.

Then get out your pen and write a letter, or your laptop and start typing. Just remember, as I was told. Be brief.