I appreciated your incredibly honest review of how patient privacy works. Instead of blanket statements, you explained the intricacies of the law as it affected you and your patients, and documented the steps you took to protect it. I found it quite refreshing to see somebody who is passionate about privacy.
Most people have a reservation about being diagnosed with a mental disorder, and understandably so. The problems in being identified in a world that tracks and labels everyone can directly impact our career, friends, family and our feelings of self-worth. What follows are the statements my patients have told me about their feelings on using insurance versus private pay.
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Reasons for Concern
What follows are some of the statements about insurance that my patients have made over the years. I’ve also included some background and some thoughts for the reasons behind these concerns.
I don’t want to be diagnosed with a mental illness
In order for your insurance to pay, they want to diagnose you with a mental illness.
The reason for this revolves around a mysterious term called Medical Necessity. Insurance won’t pay for things that aren’t medically necessary (in fact, they’d prefer not to pay at all). In order to regulate this, they want to know that you are receiving treatment for an actual illness or injury, whether physical or emotional. More specifically, they don’t want to pay for anything that they call a “convenience,” which is a fancy way of saying that if it’s not a bona fide mental health illness, it doesn’t count.
For example, if you were diagnosed as having Panic Attacks, your insurance would pay for your treatment. If you wanted to be seen for self-esteem, marital therapy or personal growth, they won’t pay. The unspoken incentive is for the therapist to diagnose the patient as having a mental illness in order for them to use their insurance. It’s unethical, potentially damaging to the patient being labeled, and puts everyone but the insurance company in a difficult situation.
Other people will have access to my therapist’s chart
Talking with a therapist is a very personal and private event. Counselors strive very hard to keep what is said in session confidential. Unless required by law, your private information is not released without your permission. In reality, it’s a little more complicated than that.
Here’s a copy of an actual letter that I recently received from an insurance company requesting a copy of one of my patient’s records:
What you talk about with your therapist ends up being coded and is ends up being available to marketers, advertisers and researchers, but not you. Some of this is done for honest and worthy reasons, such as helping researchers understand and improve mental health disorders. Some of the information is used to help pharmaceutical companies develop more effective marketing strategies. And the concern is that having the insurers developing specific profile about each individual, this information may be, someday, used against us.
Unfortunately, some of this data will be used for reasons we don’t know, a type of underground information black market. Why is this? The reality is that no one is talking about what is being done behind the scenes with this information and we have no legal rights to request these details. This mysterious battle for the possession of your intimate information is happening behind the scenes without our knowledge.
I might be labeled with a pre-existing condition
Once you are labeled has having a mental illness, it is part of your permanent medical record with both your therapist and your insurance company. If the Affordable Care Act (ACA) is repealed, pre-existing conditions will no longer be covered, and this includes mental health.
How anonymous is your information? Most people have heard about HIPAA (Health Insurance Portability and Accountability Act) in regards to patient privacy. And to be fair, it is protecting you to a certain degree: Your information cannot be shared without your consent if your name is included. The dilemma is that once your name is removed, your consent is no longer needed. And from this anonymous information, very specific patterns that identify you can be formed.
In today’s day and age, your name is no longer as uniquely identifying of who you are as is your details. Reverse-engineering and cross-referencing anonymous data in research studies have shown that privacy is, at best, an illusion. As anonymous patient data grows more extensive, it is indeed likely to figure out who is who. And from that, we are categorized and labeled, just by showing up.
My information might be stolen
Theft of your personal information from your insurance by hackers is a real concern. So far, we’ve been lucky (or simply misinformed). In the past five years, more than 41 million people have been affected by illegal U.S. health record theft and hacking attempts. In early 2015, Anthem Health revealed that 80 million patients had their information stolen… back in 2014.
If your financial information is hacked, you can change your passwords and have the protection offered by FDIC insured banks; there is no equivalent protection offered for restoring your privacy. Perhaps the practice of anonymizing and sharing patient data is ultimately helpful. The big questions that we deserve answers to are how is our private information being anonymized, who is buying and selling our information, and what protections are being given to us to prevent the theft or sale of our data?
Until we are given a vote in the matter, we really are out of the loop.
This might affect me for the rest of my life
– Concerns that having controversial labels such as Panic, Bipolar or Generalized Anxiety Disorder may impact your future choices and options.
I’m in the middle of applying for a life insurance policy
This one has surprised me; the concern expressed to me here is in being disqualified or limited due to a pre-existing mental health disorder.
I don’t want my personal information bought and sold
Personally, I don’t think this is a critical issue. Anonymous information is being used to identify and track us, regardless of whether we participate or not. However, it’s true that there are still some valid concerns here.
How these companies make use of their records on your mental health disorder is something they keep secret. Many routinely sell this data to commercial data collection companies (“aggregators”). If you ask, they will either decline to comment or give you a boilerplate generic answer such as, “We do not sell any information as we value our customers’ privacy” which is both vague and as suspicious-sounding as, “Your call is important to us, please continue to hold.”
A good example is Google: If you search for left handed monkey wrenches, your location will be identified as someone who is left-handed and is likely dealing with some kind of plumbing scenario. If you’re signed in to Google, they’ll actually add that to your invisible profile as well. And this data is what is so valuable to advertisers, marketers and researchers, and is how Google makes their money. Insurance companies, unfortunately, are in the same game.
The bottom line: Information is valuable, and most companies sell the information they gather to other companies to be collected, identified and analyzed.
If you need to see a therapist or counselor, you should still go
When your marriage is falling apart, depression is wrecking your life, or anxiety is ruining your career, concerns about privacy should not be placed above your health and well being.
If you are concerned about using insurance
Ask to be seen both as private pay and with a non-mental health diagnosis. These are more generic, not covered by insurance, and considered by many to be “safe”. They include codings such as:
- Relationship Distress with Spouse or Intimate Partner (code Z63.0)
- Phase of Life Problem (code Z60.0)
- Other Counseling or Consultation (code Z71.9, my favorite one for privacy)
If you are not only concerned, but alarmed
Do the above privacy bit, but in addition consider paying by check (not credit card) and turning off the GPS location service on your phone before you leave for your appointment. This is probably more extensive than many of us, including myself, want to get; however, I must admit that it is an issue and I have been asked about it many times before.
Regardless of your choice, remember that in the end, the goal is to get help and to get it effectively. Don’t avoid therapy just for privacy concerns (solving one problem) if this means you will still be struggling in life (avoiding a bigger problem).