Is Our Medical Information Private?

Since its inception, HIPPA has been touted as the Gold Standard in keeping our personal medical information safe and private. We assume everyone is following the rules.

Have you ever heard of KIDSNET?  What if I told you that if your child was born after 1997, their medical/immunization information is not private.  You would expect that information (EHR) to be safe in your doctor’s office computer protected by a fire wall.  And it is.  However, your child’s medical information is being shared with the Rhode Island Department of Health without your prior knowledge or consent.  DOH shares it with other State agencies.  Like DCYF, your school nurse-teacher, WIC, Family Visiting, Early Intervention and others.  And, your doctor or health provider is required transmit that data.

This legislation, we are told, will keep track of everyone’s  immunizations.  To prevent duplication and save money.  They use the excuse that Grandma might forget she had a flu shot.  Really?  

Once again this year RIDOH bills have been introduced in the legislature, S 0676 in the Senate and H 5541 in the House which propose to extend this practice of “capturing” your medical/immunization from your provider to adult Rhode Islanders.    According to this bill, you can only block the information from being shared with others (though they do not tell you exactly how to do so).  You would not be able to see what is transmitted to the Rhode Island Children and Adult Immunization Registry (RICAIR) without asking your doctor to print it out.  While they say you can request that your information be blocked or corrected if there are errors, again no details are provided.  The Rhode Island Department of Health will always have access to your information and you cannot block them.

Why should you be concerned if this bill is passed in its present form?  For one, parents are notified and soon to be adults will be notified after the transfer of information to RICAIR.  In addition to the above state agencies and others which may be added with the roll out of the adult registry, unknown others can view the information such as medical researchers and statisticians simply by filling out a form with the RI Dept of Health.  We have no idea who these individuals are or their purpose.

The addition of the adult vaccine information is concerning because of the way it could be used and abused.  In addition to your immunization status, your contact information address, email and phone number are listed in the data elements.  I don’t want to speculate or assume what would develop from this piece of legislation.  Suffice it to say that S676 or H5541 do not address the specific data points.   Here is a link to the endorsed patient demographic and vaccination event data elements from the cdc IIS data…/programs/iis/core-data-elements.  There is no information on the cyber-security of  RICAIR.

The Senate HHS Hearing on this bill is Thursday, May 9th at the Rise of the House usually between 4 and 5 p.m.

You can find the list of your Senators and Representatives in the RI Resources tab on this website.  Let your elected officials know what you think.