By Jeanie Hanley MD
When I was in medical school in the 1980s, it became clear that there was a lack of patient privacy. There was no industry-wide standard for patient protections in place. Looking back, it resembled the wild, wild west. Doctors discussed patients in elevators or at the same cafeteria where patients or their families were eating. Sometimes it was within earshot of other patients in a waiting room that a doctor, nurse or receptionist would discuss the patient’s prognosis, diagnosis or medications. Hell, my med school class was considered a ready population of guinea pigs for our professors’ research studies. No chance to give consent for testing our blood for their various projects, much less privacy as to the results, which were on occasion discussed openly among other med students.
I wasn’t diagnosed with cystic fibrosis when I was in medical school due to many frustrating years of misdiagnoses. Since I had a plethora of doctors at my disposal, I made many appointments with pulmonologists, allergists and ENT docs. When they would see me in the hallways, they might be with colleagues and ask me about my symptoms or how a medicine worked, right in front of everyone.
I didn’t take it personal (well, maybe a little). It seemed par for the course. They thought they were being engaging by asking me about it. But by asking openly in the hallway, they didn’t recognize that it caused quite a bit of embarrassment and other unsavory emotions. No one wants to be known as a “sick” person, especially among your colleagues, or really, anyone! I thought accessing these well-respected researchers and clinicians would cause them to give more thought to my health woes. They didn’t, often nixing any possibilities I suggested such as cystic fibrosis. But also, I didn’t expect their lack of common sense about health privacy. It clearly felt like a violation.
Medical advances have been numerous in the past 30 years, not only for cystic fibrosis, but for many other chronic diseases such as cancers, diabetes and genomics, to mention a few. There’s one very important advance for which I’m particularly grateful, which applies to everyone, yet it’s something we may take for granted. That is HIPAA.
HIPAA stands for the Health Insurance Portability and Accountability Act and was enacted by U.S. Congress in 1996. It has four provisions.
One is that your insurance coverage can continue and/or be transferred (be portable) for you and your family should you change or lose your job. HIPAA demands that proper health industry-wide standards be followed with regard to billing and other medical documentation in any form – electronic, paper, etched in stone, etc. The goal is to reduce health care fraud and abuse, another provision. All of these are key for patient continuity of care.
It’s the last provision of HIPAA, that I feel is equally as critical. HIPAA “requires the protection and confidential handling of protected health information”. It means your information must be kept confidential and discussion of patient health must take place in private settings. In any public setting, healthcare givers have to “Zip It” as Dr. Evil of the movie Austin Powers so ironically demands. It applies to all healthcare personnel.
I must admit, the HIPAA form is one I often mindlessly sign with every visit to the hospital or clinic. That was not always the case (the mindless part). By the time HIPAA came around, I was already diagnosed with cystic fibrosis. And healthcare providers were thankfully learning to rein it in and become HIPAA compliant. There were signs posted on elevators and public areas reminding medical personnel to not discuss patient care in public areas. There were conferences and mandatory meetings addressing it.
Fortunately, it worked and protected patient health privacy is leagues better today. Not to say that patient privacy slips don’t happen in healthcare settings, but by chance it does, as patients, we have an obligation to speak up and the law behind us to discipline whoever isn’t HIPAA compliant. If you’ve never read the HIPAA form that is doled out for your signature during your healthcare visit, I dare you (and myself) to mindfully sign it next time. In this way, we’ll be continually reminded and up-to-date on our rightful protections.
Jeanie is a physician with cystic fibrosis and is the Treasurer of CF Roundtable. You are welcome to contact her anytime at jhanley@usacfa.org.