privacy violations-hippa law

Red Bird

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Does anyone know if using the name of a patient, who has expired, is illegal?

I know that I have to change the names of the patients who are still living, but what of those who are dead?

Also, is changing their names enough? One person said that I would need to alter any significant information that could identify them, but because my WIP includes a description of their skin (such as tats), I'm hoping that I don't have to. One patient has the words H.A.R.D.L.U.C.K. tattooed on his knuckles. I've dedicated a chapter to such a world view and cannot imagine how I could change the tattoo without changing the meaning.

Thanks,
Red Bird
 

Wayne K

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Tatoos cam identify someone who has been arrested. The police write them down. I don't know much about the law, so I can't really tell you about the question.

ETA: H.A.R.D.L.U.C.K sounds like he's been arrested a few times....I'm just saying.
 

ResearchGuy

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Does anyone know if using the name of a patient, who has expired, is illegal? . . .
Using how, and with what connection to the patient? If you are, or are associated with a medical care provider to that deceased patient, that would be one thing (and confidentiality remains in force), but if it is a person known from entirely other sources (friend, reports in newspaper, etc.), quite another.

See this re HIPAA rules.

--Ken
 

raelwv

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From what I remember, HIPPA only applies to certain organizations that maintain medical records - hospitals, clinics, doc's offices. Assuming you don't fall into one of those categories, I don't think HIPPA would prevent you from doing anything.
 

Red Bird

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Thanks to all who responded.
Yes, Wayne, he stole a car from a judge, so HARDLUCK or POETICJUSTICE? Not judging, just saying...By the way, we have a lot in common. I've been reading your WIP and can't wait to see how the hard-core voice changes : )

TerzaRima, I thought I read that deceased people weren't protected under HIPAA?

Wordflood, TUFFLUCK-I like it.

ResearchGuy, I have provided medical care for these patients. As a caregiver, I cannot give out medical information to anyone other than the patients power of attorney. As a writer, I was told early in the process that all I had to do was change the names and have a disclaimer? I wonder though, if I have a disclaimer saying that patient sections are not factual, haven't I changed the genre from memoir to fiction?
 

kct webber

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One patient has the words H.A.R.D.L.U.C.K. tattooed on his knuckles. I've dedicated a chapter to such a world view and cannot imagine how I could change the tattoo without changing the meaning.

Thanks,
Red Bird

I don't know anything about the laws concerning this, but H.A.R.D.L.U.C.K on the knuckles isn't exactly original. He's not the only dude in the gang/prison/otherwise "street" society who has this. I've seen it before. A couple times. Just like LOVEHATE. Or HATEKILL. It's a common tattoo for the knuckles. Go ahead and use it, in my opinion. You could find any number of dudes with the same tat.
 

Stijn Hommes

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ResearchGuy, I have provided medical care for these patients. As a caregiver, I cannot give out medical information to anyone other than the patients power of attorney. As a writer, I was told early in the process that all I had to do was change the names and have a disclaimer? I wonder though, if I have a disclaimer saying that patient sections are not factual, haven't I changed the genre from memoir to fiction?
1) Get permission to write about the people from their relatives.
2) Instead of damaging the integrity of the facts you'd need a disclaimer that says you changed certain details to protect their privacy.
 

ResearchGuy

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HIPAA, Not HIPPA

Note: The Health Insurance Portability and Accountability Act of 1996 (HIPAA). It is not "HIPPA". (I thought I had seen it mis-cited here, although maybe that has all been corrected.)

See http://www.hhs.gov/ocr/privacy/ for an official overview of the privacy aspects.

As for it's being fiction, consider not sticking TOO close to the facts. (Better, DON'T replicate the facts as if they were fictitious, and don't use real names.) Fiction is fiction. Real life is inspiration. but the author is free to embellish. select, and mix-and-match any way he or she sees fit. If readers can identify a real individual in the novel on the basis of descriptions and incidents (or or names!), that is probably trouble in any case, even aside from HIPAA privacy rules that might have thus been violated.

My view, FWIW.

By the way, author (legal thrillers) John Lescroart uses some names of real people in his books. They contribute to charity for that privilege, although the names are attached to fictional people in John's novels who bear no resemblance to the real people.

--Ken
 

jclarkdawe

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HIPAA is not your only problem. If you saw these people in some connection as a medical professional (doctor, nurse, therapist, technician), these people saw you with an expectation that their affairs would be confidential. Patient privacy is covered under both specific laws and just general expectations. You can be sued regardless of HIPAA.

If the person is identifiable, then you need their written permission. When I wrote EQUINE LIABILITY, I went with published, public information. Although I acquired additional information from other sources, which enabled me to develop a deeper understanding of some of the cases, that information was never used. Nor were any of my clients used. Too much risk as far as I was concerned.

This is an area where you need to talk with an attorney who understands privacy rights. You need to address this not on a state issue, but on a national level.

And a dead patient doesn't help you one iota. They still have relatives.

Best of luck,

Jim Clark-Dawe
 

Red Bird

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Now I have more to think about, but before I dive into that, I'm going to give you an example of what I have written. It doesn't really have much to do with patient specific medical conditions. The patients serve as a means to portray a life lesson. I've worked in the medical field for nearly three decades, so many of them have passed. I wouldn't know how to contact some of them.

Susie is black, but you wouldn't know it by glancing at her. A glimpse would suggest that she looks unusual, but you'd have to look closely to see that her nose is a little wider than a white person's nose, and her skin, though pale, looks as if there's a darkenss beneath a coat of dust. Her eyes are brown; the lashes graying with age. She gets her hair done every other Friday, and the beautician is the first person to tell me that she is black: "She has black people hair." Susie's skin reveals how she spent her life being judged by not one race but two.

Susie has a husband, Fred, who comes to see her often. Fred looks more African American than Susie does, but there is something Native American in the mix too. Fred and Susie met when they were in the military. Fred likes to preach and practice cadence. He takes pride in chanting those naughty ones known to soldiers who have spent too much time alone.

In a moment of great insensitivity, I asked Fred if Susie was black. I regretted asking him the question; his reaction told me that he had suffered a great deal of pain because of the mixture of bloodlines. He said, "Now Redbird, we are not going to talk about that." Months later, Fred brought in Susie's old photo album for me to look at. Fred found a way to show me what he could not discuss; it seemed as if he wanted me to know that Susie's father was missing from the pictures. Her mother and aunts were photographed and had skin the cololr of milk-chocolate.

Susie and I have a shared fantasy. We will someday go to the beach, don bikinis, and hire cabana boys to cater to us. Susie cannot tolerate having the air removed from her cuff to speak, but she moves her hands some, which I interpret as a wave, and smiles when she sees me. She was a looker in her youth. There is a picture of her in her military uniform hanging in her room. She doesn't seem to fight to stay alive like the others do. Maybe her fight is over. She seems content to lie there. She gives what she can, her smile. When she wants something, she raises her eyebrows. When she has a headache, she squints her eyes together. Ive come to know more about Susie than I know about myself. My skin is darker than Susie's. I question my own heritage as I try to unravel Susie's; her skin sends me on a quest to discover my roots.

I didn't know my grandfathers. My father's dad died when he was a little boy. I have a picture of my dad standing over his casket, which is covered with a flag. My dad has his last name, but was raised by his stepfather who we called Ralph. My grandmother divorced him.

My mother was raised by her stepfather. Her father lived next door to her mother and admitted being her father, but would have nothing to do with her. I met him once. He showed no reaction to seeing me. It was like going to a new church where people welcome you but are not sure you really believe or belong. Though I've never known my grandfathers, I know my grandmothers.

Okay, so that's how it goes. Susie could be one of several patients that I have cared for over the years. Some have very distinguishing marks, but sill, they're not uncommon. Do those of you who responded think that this makes a difference?

Thanks,
Red Bird
 

SirOtter

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By the way, author (legal thrillers) John Lescroart uses some names of real people in his books.

Many authors do that, with or without charity connections. It's called Tuckerization, after Wilson (Bob) Tucker, an SF writer who did it in the 50s. http://en.wikipedia.org/wiki/Tuckerization

I met Bob several times. Quite a character.

BTW, Allen Steele Tuckerized me in his first novel, Orbital Decay.
 

GeorgeK

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Privacy regulations do cover the deceased and their estates if you are disclosing medical information which does include their name. At morbidity and mortality rounds it is customary to simply use someone's initials followed by a description. Those who know, will know, those who don't know just hear the case and not the person.

Tatoos performed at a parlor are not medical procedures. They are not copywrited as far as I know, so I doubt it would be a problem to have a description of a tatoo as long as you don't use the actual person's name.
 

Tsu Dho Nimh

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Does anyone know if using the name of a patient, who has expired, is illegal?

I know that I have to change the names of the patients who are still living, but what of those who are dead?

http://www.hipaa.org/
http://www.hhs.gov/news/press/2002pres/20020809.html

The Administrative Simplification standards adopted by Health and Human Services (HHS) under the Health Insurance Portability and Accountability Act of 1996 (HIPAA) apply to any entity that is
  • a health care provider that conducts certain transactions in electronic form (called here a "covered health care provider").
  • a health care clearinghouse.
  • a health plan.
An entity that is one or more of these types of entities is referred to as a "covered entity" in the Administrative Simplification regulations.


If you aren't a "covered entity" HIPAA" doesn't apply to you.

How are you using the medical data, and how did you acquire it? There are other laws that might affect your use of it.

But, dead people have death certificates that are public record.

Medical bloggers do discuss cases, but they change the details enough that the patient is not identifiable.
 
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Red Bird

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TDN,
I would not be considered a covered entity under your definition. Yeah!

The medical data is used to get to the root of how each patient has lived.

I have changed the names of the patients and am in the process of changing some of the defining marks. Honestly, I'm wondering how anyone can write memoir without risking suit from someone? If you read the scenario above, you can see that I'm not really talking about Sarah's medical condition at all.

Thanks,
Red Bird
 

kdnxdr

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I found this thread about the hipaa law and wanted to add something that I found interesting.

It's in your own best interest to file a hipaa form with your local hospital where you would possible be taken in the case of an emergency. That way, your local hospital will have a list of family and friends or "anyone" that you specify that could acquire information about you should you be admitted to the hospital. I might be wrong, but what I understood was that even family need to be approved according to the hipaa form for the hospital to release information about you. If you were to be unconscious or incapable of communicating at the time of being admitted, it would be more difficult for anyone to access that information.

I know of one case where a Hispanic man, who could not speak English, was severely burned and was near death. He had no family in the immediate area. When I and others attempted to help identify and connect him to someone who could help him, we were restricted from any information, including the fact that he was admitted. We were eventually able to get a Hispanic pastor in to him who was able to help him connect with family.

There are good reasons for the kind of protection that hipaa provides but there are also some potentially serious problems with this law.

People should contact their local hospital to file a hipaa form should an emergency even occur. IMO
 

Red Bird

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kdnxdr,
So true, but really I'm trying to "give a voice to those who may not have one." I am in no way trying to bring harm to any of the patients that I care for. Indeed, I have used markings to establish that a life's story can be revealed, if one takes the time to look. Sort of like the saying, "Never forget where your shoes have been."
There are those who need protection because they are being sought by people who would cause them harm.
Anyway, I will seek legal counsel to see how I proceed to protect the privacy of the patients and myself.
Thanks,
Red Bird
 

Deb Kinnard

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I work in health care (health info) and I would NEVER use any real patient's name or medical data that could be linked. That's abusive IMO and opens me up to a whole world of professional hurt.

Now -- have I ever "borrowed" a patient's name for one of my characters? Yes. But just the last name, and mixed it with a different first name so that nobody could say I swiped it. Have I ever borrowed scenarios from the records I must read? Yes, but I've changed enough detail so that it becomes a generic description of the malady involved. Merck's Manual is priceless in this regard, as are the various medical web sites.

We who care for patients, or their information, have an additional burden to "do no harm." I would suggest to you that you look over your work very, very carefully and see if these are in fact stories you should be telling. It's your call, of course, but go with caution. Maybe some of these patients would rather keep their voices silent and their stories private.
 

Red Bird

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Deb,
I will look at Merck's manual. Thanks for suggesting it.
I agree that health care workers have the obligation to "cause no harm." I have an incredible amount of compassion for my patients.
Again, it is not about patient specific medical information, it is about what we can learn from each of them if we take the time to read the stories of their lives.
My belief is that for each story we hear, there are thousands that go untold. It is my opinion that "keeping secrets" damages lives. Great stories have been told, and many people helped by the willingness of one person to speak up against that which pains people. Of course, there is a burden to lending voice too. But I think I can navigate through those waters, in a respectful manner, and share my experiences in a way that will result in a development of empathy and compassion for people who have been judged harshly. It's a lofty goal, but important, to me.
I guess it is fair to assume that some people would not want their stories told, which is why the scenarios are generic: skin color, scars, track marks, tats. It really isn't any different than what you have done-borrowing insight into a life for the creation of a story and protecting the rights of the patients by changing their names.
Thanks for your insight,
Red Bird
 

Red Bird

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Thanks to everyone for their input on this sensitive subject.

I've researched the hipaa laws and regulations that were recommended and thought I'd share what I learned.
Hippa-Health Insurance Portablility and Accountability Act. Developed by Congress to provide a means for protecting the privacy of individually identifiable health information. Identifiable health information defined as: name, address and telephone numbers, social security number, medical records number, full face photographs, and account numbers. Any information recorded in any form before 4/14/2003 are not covered by the law.
So, I haven't any worries on those terms, but "health information" is a different story.

Health information is defined as any information, whether oral or recorded in any form or medium, that is created or received by a health care provider and the information relates to the past, present, or future physical or mental health or condition of any individual; the procision of health care to an individual; or the past, present, or future payment for the provision of health care to an individual.

So, there is much still to learn, but it is good to know that as long as I change the names and stick to general information I can continue with my WIP. It will be challenging to change specific information and keep the lessons that each patient introduces into the story. Each patient serves as a chapter opening, but they are only present in twenty-six pages of a finished draft.

And I thought the first draft was the hardest part. Ha.

Thanks again,
Red Bird