“Bureaucracy is the death of all sound work” – Albert Einstein
HIPAA, The Health Information Portability and Accountability Act of 1996, was enacted as a broad Congressional attempt at incremental healthcare reform. The Administrative Simplification section of HIPAA is designed to improve the efficiency and effectiveness of the healthcare system by standardizing the electronic data for specified administrative and financial transactions, while protecting the security and confidentiality of that information.
This all “sounds good” doesn’t it? It should be, it has lofty goals. But… always a but… it is being largely misunderstood, misused and often abused by our healthcare providers. It was intended for the use of sharing information amongst organizations, but in doing so, making sure that our privacy was protected, from those organizations. It was not intended to be imposed in a draconian way on patients FROM their families. In reading the actual law, which will turn you to stone in a way much worse than the scientific studies we try to wade through, I learned that there is nothing in the mandate that requires a written approval from the patient to allow healthcare folks to share your information, except… they allow for individual providers to require their own documents, which most are doing. They enact little ditties like its only good for one year, or it has to list specifically what they can talk to your loved ones about. I have personally found in our local doctor’s offices, not at Little Rock, that it is often used to “stop” them from having to help me. And yet, we have filled out all of their forms. It’s very frustrating. In other words, the mandate very specifically hoped that it would NOT impact family members and friends from being active participants the healthcare of their loved ones. If you have your friend or daughter with you in the Emergency Room for instance, it is assumed that they can talk freely with them. Unless you tell them not to. But the provision has been inverted and now doctor’s offices assume they cannot speak to the spouse without written forms signed by the patient on file. This is clearly not what was intended by the well meaning law.
So here is some information for you.
HIPPA Law (pdf, 100 pages!)
Understanding of HIPAA for Consumers (print this and keep it with you)
Generic HIPAA Release Form (print fill out and keep with you, understanding that each facility will have their own form, but at least, if there is an emergency of some sort, you have it with you.)
Most offices and facilities are requiring that these forms be filled out every single year. So keep that in mind as well and try to remember to ask each year if you are due to sign another one. They will not remind you and when you find yourself in need of labs or other communication, they may indicate that they have no up to date forms for you so… you are out of luck. It can be very stressful among all the other things you are dealing with, so there is simply no way around it except for you to maintain one more thing to keep the upper hand in your loved ones care.
Did you know, for instance, that with electronic health care mandates there are rules about who can access your now very accessible records? You can request an audit to see who has been accessing your files. Why would you want to do this? Well we had a situation where we chose not to use a doctor for Dave’s treatment in a large facility. We stayed within the network and it became obvious to me based on comments made by other physicians that the doctor we did not engage was still keeping tabs on my husband’s healthcare choices. It was so unnerving that we left the system entirely to go to another network. I could have filed a complaint and requested an audit (once a year, free of charge), but I had more important issues to deal with. We often think celebrities are the only ones affected by people sneaking a look, but it can happen to us more anonymous folks too. Admittedly, what we experienced is probably unusual, but it is not unique. The emphasis right now is more on stopping communication with loved ones without all the proper paperwork, but not focusing on the in-house abuses.
There are many benefits to electronic health records. It is well intended. But as with many things we swap one set of problems for another. Yet another thing for you to have to educate yourself about. Sorry about that. But I hope I have provided you with some breadcrumbs a long the way.
It is my understanding that the penalties for individuals in the medical profession who violate HIPAA rules is severe. It would appear that because of that, they are erring on the side of caution in a way that has become extremely cumbersome for both the patient and the caregivers.
I had a conversation with a doctor who told me that one of the doctors in their office audits her own patient’s records every quarter! That if she finds anyone accessing them unauthorized, she reports it to their administration and they have all been fired (which is up to each facility – the penalties). He then followed up with, “Who has time for that? Very few?” As with many things in America, consumer/buyer beware. Ultimately it is up to us to stay on top of such things, should the need arise.
When we are in Little Rock, I experience NONE of this nonsense. I can go up to anyone sitting at a computer and ask for my husband’s labs. Which validates the fact that it was not intended for the patient and their families. What is supposed to create uniformity, was uniformity for the administrators and yet it has unintended consequences for the family members and patients. It is the local smaller doctor’s offices that I have the most trouble with. Not ever assuming it won’t be a problem, I was on the phone late at night when Dave went into the local hospital emergency room, leaving messages with the social workers about getting the HIPAA forms signed from my husband so the doctor would have to talk to me on the phone (3,000 miles away). I was right to do this. He wouldn’t do anything without a release form, for every single request! Anyway, hope this helps to empower you to understand HIPAA a little better, its intended use and not intended use.
A special thank you to my friend since 7th grade, Marchel, who works in the healthcare field and helped me to understand that HIPAA was intended for administrators and health insurance, not exclusion of family members from the process. She was very distressed to hear about my experience and very helpful in her efforts to give me knowledge and power over the out-nesses being imposed on me, which is not the intention of the law. So while the law is a good idea (great actually), it seems like the people far removed from its source lack understanding in its scope and purpose. And just because I have had trouble, doesn’t mean you will, but do be prepared.
