For a patient or caregiver, understanding HIPAA is a hip thing

The law protects sensitive patient health information from being disclosed

Carlos Briceño avatar

by Carlos Briceño |

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From time to time, my son-in-law, René, will ask me “when you were young” questions, usually to poke good-natured fun at me.

Here’s what I mean: I was born in 1964, but if you heard what he’s asked me — such as, “Did you use an abacus instead of a calculator when you were in high school?” — you’d think I was born in the Stone Age.

Sometimes, however, he’ll ask a serious question that makes me think. For instance, he wondered recently how medical care had changed since my childhood.

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My first thought was that it had changed a lot. Some of the changes have been positive, such as telehealth. A few of the changes have had mixed consequences, in my opinion, such as the enforcement of the Health Insurance Portability and Accountability Act, or HIPAA.

I started by explaining that to see a doctor back in the day, I had to pick up a landline phone and call to schedule an appointment. He gasped at this, probably in reaction to me making a call on a device that wasn’t a cellphone.

I explained that new patients would be given a clipboard holding several sheets of paper with simple questions about their health and family health history. They’d answer the questions and hand the clipboard back.

Not much change there, René pointed out.

“Yes and no,” I replied. We still get a clipboard with papers to fill out; that’s true. But we only had to do that the first time we went to the doctor. After the first visit, all we had to do was sign in and wait to be called. The whole process took 10 minutes and was relatively simple.

“What about HIPAA?” he asked.

My beloved wife, Jill, chimed in and explained that HIPAA didn’t exist when dinosaurs roamed the earth, referring to my young adult years.

His question opened up an avenue for Jill to rant about HIPAA. She dealt with it when she worked at several doctors’ offices and pharmacies.

She also has experience dealing with it as a caregiver for her late father, Ken, who had Huntington’s disease (HD). At a certain point, her dad wasn’t capable of scheduling his appointments, calling pharmacies for medication refills, or discussing new symptoms with his neurologist. So Jill, who is gene-positive for HD, and her mother would do all of that for her dad.

HIPAA, she said, made it more difficult. She said the doctor’s office at times wouldn’t discuss certain topics in depth with her and her mom because of privacy concerns, which delayed treatments.

Jill said she believes the concept of HIPAA is good because it sets national standards on how records with personal, identifiable information are handled and transmitted electronically. It’s good to protect patients by limiting how and with whom providers share this type of information.

Having the conversation

HIPAA’s goal is to “protect sensitive patient health information from being disclosed without the patient’s consent or knowledge.”

It also means that a healthcare provider can share information with a family member if the patient agrees or doesn’t object while the family member is present in the room, but the provider can share “only the information that the person involved needs to know about the patient’s care or payment for care.”

Jill said that one of her biggest issues is that providers seem to decide how they adhere to that rule in ways that aren’t consistent.

She told us that, as her HD continues to progress, she’ll rely on me to help with her care. That thought causes her to flash back to the frustrations she felt when she was one of her father’s caregivers, which makes her anxious.

Jill told René that she always gives permission for staff at doctors’ offices to speak with me. But we’ve both witnessed providers blaming HIPAA for being unable to honor that request.

The conversation wound down with René saying that life was much simpler when the dinosaurs roamed the earth. We laughed, yet for readers of this column, the message I want to share is a serious one: Look at the HIPAA policy your providers give you and have a conversation with them about how they balance HIPAA compliance with the patient’s needs. It could make your lives a lot easier when dealing with serious issues down the road.

Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.


Richard avatar


When dinosaurs roamed the Earth we would go to a single point of contact (our GP) to access medical treatment and specialists were less frequently contacted. There is a volatility in most practices today with respect to family practitioners and specialists seem to be the rule rather than the exception.


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