You Can't Treat a Whole Person with Half a Record

One of the most controversial elements of bipartisan mental health reform bills in Congress is a surprising one.

It’s an effort to amend a 45 year-old regulation that outlived its useful life twenty-five years ago when the Americans with Disabilities Act (ADA) was signed into law.  It is referred to in Washington as “42 CFR Part 2.”  You might know it as the rule that forces you to sign at least two authorizations, instead of one, just to get your own health records sent from one place to another.

Today, if you sign an authorization stating “please share all of my health records and medical history with another provider,” you might think that second provider is going to get everything.  But 42 CFR says substance use disorder isn’t covered by that – for that, you need a second one.

Keep in mind that in 1970, when 42 CFR was being considered, you could discriminate against someone with a substance use disorder.  You could even fire them from their job.  So there was a reason to keep this information out of paper records that could fall into pretty much anyone’s hands, especially if they were left sitting near the carbon copier at work.

But in 1990, the ADA made it illegal to discriminate on the basis of chronic disease and disability, including substance use disorder.

But that didn’t change 42 CFR.  So when the Health Insurance Portability and Accountability Act (HIPAA) passed in 1996 and helped lay the foundation for the electronic sharing of health information, it had to be molded to fit both the ADA and the 42 CFR realities.

Here’s what evolved.  Because so many people with substance use disorders had co-occurring mental health conditions, and vice-versa, lawyers suggested to health care providers that the safest course of action was to keep mental health information out of shared health records, too.

So as we began to populate our shared electronic health records, we pretty much left out all the behavioral health data.  This played into the hands of some very nervous providers, by the way, who were told erroneously that if we didn’t do this, their private psychiatric notes would have to be included in the shared health record.

But think about that.  If only some of the names of providers, dates of service, diagnoses, and medications prescribed are included in a health record, we’re (sometimes) trying to make life-and-death decisions based on partial information. 

It’s like playing a poker hand with two cards hidden.  Sure, you might be holding an ace, king, and queen of hearts, but would you really want to bet your life that the two cards you can’t see are the jack and the 10?

In the post-parity, post-ACA world, we’re supposed to be taking a more holistic approach to health care, encouraging the integration of health and behavioral health care.

But you can’t treat a whole person with half a record.

Making the argument to keep these records separate in an integrating world is increasingly indefensible.  After all, if 42 CFR Part 2 were eliminated, it wouldn’t mean that protected health information would suddenly enter the public domain, available to anyone and everyone to see it whenever they had the urge.  On the contrary, every individual would still control who sees their health information and when – they just wouldn’t have to sign multiple authorizations to accomplish this.

Bad things happen when you try to treat a whole person with half a record. 

Just ask providers.  The same medication can be prescribed multiple times, possible drug interactions are missed, and wrong diagnoses are made because important information is missing.  Or you just don’t rely on the record in front of you at all, and force a patient to do every test all over again.

People who object to changing 42 CFR Part 2 concede that a person can’t be discriminated against anymore on the basis of a disability.  But they say that they can still be arrested for breaking the law if they have a substance use disorder and buy an illegal drug.  That’s a different issue, and having a separate authorization to share health records has never protected someone from arrest and prosecution for breaking the law. 

And let’s be honest. Illegally purchased drugs don’t show up in electronic health records anyway.

Paul Gionfriddo’s views as expressed on this blog are his own.  For more information, he can be reached at gionfriddopaul@gmail.com.  Follow Paul on Twitter at @pgionfriddo.