Medical records and your 'privacy'

[harley47]

I saw an eye specialist this morning-my wife wanted me to have a 'baseline' check for any macular degeneration as she has some pre-macular concerns and takes drops. All was OK, as I anticipated. I can imagine the bill, but Medicare will slice and dice that , to be sure.
When I left the exam room I was given the form that billing uses -procedure codes,etc. I was to turn it in at the front desk. I happened to notice on the reverse side-in pencil-were my meds--I had only disclosed dyxocline-a mild antibiotic for my left eye health. Yet, on the back were written spironlactone, finesteride, and estradiol !!
I was dismayed over this. Evidently the information my oncologist has-thought I should be honest with him-went into a data base that can be mined by others in the health profession-don't know if this extends to folks like podiatrists, optometrists, maybe even manicurists! This is unfair and insulting--what is 'patient privacy' all about anyway?
When I see my Oncologist in a week about my recent bone marrow testing results, I plan to enquire just who has access to this personal information. Clearly the eye MD doesn't need to know about my Estradiol! He could glance at my chest and surmise 'changes'.
Really makes a patient prone to fibbing since it will be literally blabbed all around town!
Has anyone had a similar embarassing experience? Is there a way to keep meds 'private' or restricted to the MD caring for your gender identity issue ?

[Nigella]

Do you not think it is unwise not to disclose any medication you are taking? If any doctor is considering precribing you any new medication, they should be told of any you are already taking. There can be adverse effects when mixing medications that do not go together.

Do you not trust your various doctors to keep your "secret"?

[AllieSF]

I agree with Nigella. Why do you think that "it will be literally blabbed all around town!"? Your doctor has the legal obligation to care for your health and needs to know what medications, vitamins and supplements and what dosages that you are taking to properly prescribe medications to you. Not all of those interact with each other, but if they do, we would probably be reading that someone is suing their doctor for wrongfully prescribing medications. Give them a break and be glad that they are thinking about your health. If you are on HRT, I would think that you are transitioning and need to eventually be out as a woman to the world anyway.

PS: This reminds me of another Sienfeld episode where Elaine got on the Doctor's list as a troublesome patient.

http://www.youtube.com/watch?v=pyossoHFDJg

[LeaP]

It's called coordination of care and is part of every insurance plan. It's to ensure that providers have complete medical information in order to minimize risk.

[Marleena]

Harley I feel for ya, but they need to know. I'm about tell my family doctor and I have been fearing it and putting it off. I only have a few days of BP meds left so I need to see him. The Endo I see is in another city so I'm not sure if my doc has seen the results as he never asked for my family doctors name.

Anyways my Doc has about five girls working there with access to my files so I expect them to see it. So how will the attitudes change towards me? Will it be funny or weird to them? Then there is the doctor himself, how do I say it? Oh..BTW doc I'm trans and I'm on female hormones.lol. Yep, definitely embarrassing since my kids see him and this will be totally out of the blue. I have no choice though. I'll be in guy mode as usual so I don't shock anybody or cause a ruckus.lol.

[kellycan27]

Almost all of my doctors have had me sign a release form for my medical records to be be shared with either insurers or other medical professionals as they see fit or are required. I don't think you'll have to worry about them being plastered all over youtube or in the doctor's blogs.

[Marleena]

Almost all of my doctors have had me sign a release form for my medical records to be be shared with either insurers or other medical professionals as they see fit or are required. I don't think you'll have to worry about them being plastered all over youtube or in the doctor's blogs.

Well if I see strange cars going by house slowly and pointing I'll know it's not so secret anymore.:D

[Lorileah]

And thus why so many people have reactions to medication...because they don't believe their oncologist needs to know what the cardiologist prescribed who should not know what the endo prescribed. If you don't tell them and they can't find out from your medical records (which by the way you had to release if you read the forms and if you are on Medicare...you ain't got a choice) then they could give you something that could react with what you are on. Spiro alone can react with at least 8 different drug classes alone and probably something an ophthalmologist may use or prescribe. If you didn't tell them you are lucky they took the time to find out themselves. People think medications are so benign.

[Badtranny]

Every single doc or specialist who gets paid by my insurance company has access to ALL of my records. There is nothing I can do about it except start paying cash.

There's a lot of consternation around here about coming out but why wouldn't you want to be out to your doctors? They kinda need to know what meds you're on and HRT is serious medicine indeed.

[elizabethamy]

Depends on how big your town is -- now that I'm in a smaller place, I'm nervous about this too -- not the doctor herself, but all the assistants and such. Some people talk, and this is a big and bad thing to talk about...but at the same time, I agree that it's a risk worth taking.

[Marleena]

I just thought I'd add this link as it applies to CD/TG/TS people and telling your doctor.

http://www.firelily.com/gender/gianna/not.telling.physician.html

I should add my ex wife used to work in his office and is also a patient of my doctor. Ughh..

[scarlett]

Your question is totally useless and irrelevant since you are so secretive that you have no location in your profile. If you post and assume that every one here knows that you are in the US, for example, then you are marginalizing all those from every other country, in addition to making it impossible to give you an answer with any meaning. It also invites all kinds of off-the-wall replies from people that have no knowledge of privacy requirements where you are.

[Rianna Humble]

It seems strange to me to read someone who does not disclose their location criticising another person for the same thing.

As it happens there are clues to the OP's general location such as the reference to Medicare.

Like many others, I find it hard to credit the OP's paranoia in suggesting that a manicurist might be given access to records which are covered by patient confidentiality simply because two health professionals who need to know about what each other is prescribing and who were both bound by patient confidentiality knew what medication she was on.

If you don't want a medical practitioner to treat you properly with full knowledge of how that treatment may interact with other medications you are taking, don't go to see them.

[mikiSJ]

Here is a link to Health Insurance Portability and Accountability Act (HIPAA) which is law regarding the dissemination of personal medical histories, who is covered, what can be disclosed and to who the information can be disclosed:

http://www.hhs.gov/ocr/privacy/hipaa/understanding/summary/index.html

While it is still possible for a mean doctor or staff member to "out" you, their are consequences that could include license forfeiture for doing so.

Miki

[Aprilrain]

maybe even manicurists!

I think she might already be on to you:heehee:

[Badtranny]

I think she might already be on to you:heehee:

What about her esthetician?

[Aprilrain]

What about her esthetician?

lets face it, the cat is outa the bag!

[elizabethamy]

The girl at Claire's who pierces ears sees you walk by and has memorized your medical records.

[kimdl93]

It may be embarrassing, but its really crucial for health care professionals to know what pharmaceuticals (and even over-the counter meds) you may be taking. Drugs can interact in a variety of ways. Some can negate the effect of others and some interactions can be life threatening.

Health care records are covered by HIPPA. A provider has to take reasonable precautions to prevent this information from being disclosed inappropriately. However, it would make no sense to restrict health care professionals from access to this information. It could literally threaten your life. But please don't be alamred. manicurists are not health care.

[StephanieC]

I agree, the teeth in HIPAA are real and health care professionals understand that. The one thing that I've had to consider are the questions about release of records to people outside insurance (eg spouse), "in case of emergency contacts", and the contact information. Even some vague question/information could cause some issues.

-stephani

[melissaK]

An FYI. If you get in a car accident (in the US) and are hurt and seek payment for pain and suffering, your medical records will make the rounds among the insurance adjusters, attorneys and their paralegals. If you are stealth, and pre or post op TS info is in your records, you really ought to tell your attorney so she knows it and can protect you. If you don't tell it can slip out at the wrong time, either just to embarrass you or to actually create prejudice to use against you.

Your attorneys duty of confidentiality with their clients applies to your attorney and her staff (its taken pretty seriously, but lack of discretion has been known to occur).

To disclose your records to the other side (the folks with the money), you must authorize this. So pay attention to the authorizations any adverse insurance company or even your attorney asks you to sign.

Usually TS status is irrelevant to litigation, and is excluded at a trial. But before a trial in the phase called pre-trial discovery, if you want the opposing attorney to not know you are TS, or to just keep your disclosed records confidential for use only to determine relevancy at trial, you must get your attorney to prepare and obtain a protective order in advance. The protective order can try to keep all your TS records out of the adverse attorneys hands, or just require the other attorney to preserve confidentiality. (Exact procedure varies by state and court).

Many high volume PI firms use paralegals who may not be trained enough to do this so you should not assume its going to be done automatically. You need to make a big deal out of it right away with your own attorney if privacy is a concern.

Hugs,
'lissa

[StephanieC]

Great information 'lissa. I never knew about the protective order. Incidentally, I happen to know someone here that is training to be a paralegal and they do go through training about these sorts of things. But you're right, sometimes things might slip.

[PretzelGirl]

There are also states that have a database of all prescriptions written in that state. These are accessible by doctors and pharmacists. They could use it just to see what you are receiving in general even though the main use is to identify abuse. Your prescription history is not going to be a secret to the professionals but you do have to trust professionals to keep confidentiality.

[harley47]

S many good posts. thanks! I did phone the insurance person at my oncologist to try to figure out how personal info about meds went to a friggen eye MD I was seeing to determine if I had any pre glaucoma. Recently that office had been asked to complete yet another form and on that I indicated my personal physician who prescribes my meds as being the contact person regarding my possible cancer issues.
It didn't occur to me that an eyelid specialist at the same super eye care practise had referred me over 3 years ago to an Oncologist there. I have had no contact with that vainglorious individual and have no plans ever to see him again. BUT, he was still showing as someone on a 'need to know' basis (or whatever medicalese is correct) and this was news to me! So I got the young lady to delete "Dr Gucci' from this list. I was never informed that he was still listed- this wasn't shared with me. She said I could ask the folks at the eye care place to delete stuff, but what the hell. I suppose staff there is too busy or doesn't really care.
Next thing you know,however, my female MD cornea specialist will get copied on the glaucoma exam and she could see medicines. I give up. I guess it doesn't matter that much.
I do appreciate that surgeons, for example, have to know about meds. When slicing and dicing surgery was considered as treatment for my malicious Merkel cell tumor on my left upper eyelid (over Radiation was used and ruined my eye, but that is unrelated to this) an MD on the team was very stern with me that I had concealed my Spiro (the Oncologist knew and it was on his records) as it could cause issues when under anaethesia, so I do know this isn't a trivial matter when medical treatment is involved.
Surgery wasn't used and it didn't come into play.
On this topic--about info going to authorities--recently the WSJ had a story about a woman in her 50's in CA who suspected she might have some Altheimer symptons--she was still OK, but with the release of treatment or exam info she ended up losing her driver's license! Talk about Big Brother running amok!

[Melody Moore]

I agree with the others here who say that this doctor does need to know about your current medications because
of possible conflicts with other medication they might need to prescribe to you. You might also believe that hormones
are not going to affect the eyes which is not true. I found that while I have been on hormone therapy the ocular shape
of my eyes has changed. Before HRT I use to be short sighted, and required glasses to drive at night-time or in limited
light. Now I don't need to wear glasses at all. So that was a real bonus for me. :) Anyway I would not be concerned at
all about a specialist knowing what medical treatments I was having, because they too have an obligation to protect your
privacy. So whatever information they have will not be shared with anyone else who is not looking after your healthcare.

So relax!

[Rianna Humble]

Next thing you know,however, my female MD cornea specialist will get copied on the glaucoma exam and she could see medicines. I give up.

I can totally see how it would be inconvenient for you that someone who is treating your eye condition might find out about you being screened for a specific eye problem. Whatever next, your MD actually finding out that you take medication? :eek:

The last thing you want is for anyone treating you to know all the relevant information that will allow them to judge whether their proposed treatment will do good or harm to you - sheesh!

[giuseppina]

Hello Harley

Your medical information is shared to maximise the probability of an optimal outcome. I think it is unwise not to share all relevant data with all of your doctors. If nothing else, it will minimise the probability of a dangerous drug or treatment interaction or reaction. Your medical doctors are supposed to work together as a team, not in isolation. In any case, I think it is safe to say that doctors everywhere are bound to keep everyone's medical information confidential under pain of professional misconduct disciplinary charges.

I don't know if you have heard the story of Karen Anne Quinlan. She died when she mixed psychoactive drugs with alcoholic beverages, a dangerous combination if there ever was one. While this death was probably caused by Ms Quinlan's actions, it does illustrate catastrophic effects of drug interactions, and yes, alcohol is a drug.

[Laura_Stephens]

Several points:

1) I agree with everyone in that all medical professons who treat you need access to your complete medical history.

2) HIPAA has "teeth" but it is largely ignored. The number of actual cases brought by the Justice Department relative to HIPAA violations is so miniscule as to laughable. Effectively, health care providers see no reason to implement all that HIPAA and HITEK entails because there is little to no enforcement.

3) It used to be that data could only be shared if you used insurance. "Conventional" wisdom held that you could pay cash and keep thigs relatively "secret". That is no longer the case. Beginning with the massive stimulus bill -- not the so-called "Obamacare" legislation -- all medical professionals are required to submit records to the Federal Government (i.e., HHS) for all treatments without regard to who paid for a procedure/tratment/exam or how it was paid for. Thus, everything is going into a database. the scary part of this is that -- in the U.S. -- more than two-thirds of all major data breaches came not from the private sector. Rather, the breaches occured with goverment controled data be it federal, state, or a municipality.

If you seek or receive medical services for anything relative to GID, being TS, etc., there is almost no way to keep things "secret" short of finding a medical professional who will allow you to use a "John Doe". Of course every state board of pharmacy requires positive identification for anything dispensed that is a "legend drug" or higher (i.e., scheduled drugs).

I wish all who who seek medical assistance luck in trying to keep information relatively contained. In today's world, at least in the U.S., it is getting progressively more difficult to do so.

[PretzelGirl]

Laura, there may not be a lot of government policing of HIPPA, but the companies themselves do a lot either out of fear of to do the right thing. I know one person with 25 years in the insurance industry made the bad choice of pulling up someone's record that she wasn't actually working on. One incident and she no longer works in that industry.

[LeaP]

2) HIPAA has "teeth" but it is largely ignored.

Truer words were never spoken! I am familiar with HIPAA because my wife was a medical practice administrator. Although I don't have the detailed knowledge that she does, I can walk into any medical office and see violations everywhere. HIPAA is well intended. But as with many over-reaching regulations, it can be difficult to comply. This is in part due to its sheer scope and size. But it also interferes with the practical and efficient operation of the office. One may fairly say that privacy is worth this. But in an industry whose financials are substantially based on productivity - on patient throughput, it comes at a cost. It's ironic that it may all be for naught, considering the centralization of information that has been mentioned and the associated issues.

[harley47]

I accept that any cat is 'out of the bag'. my prescriptions are literally public information. The Oncologist's nurse said that anyone with access to the specific data base could look up by name-mine is unusual-not 'John Smith' -so any attempt at concealing records fails.
For those who may be curious, interested--my bone marrow test shows two slow growing leukemias. A CT scan showed no lymphoma or other cancers, so the Oncologist is not too concerned. I will have blood draws-13 vials last time- quarterly to check the white blood count,etc.
I don't have any medical research knowledge to confirm my suspicion-that six years of anti-androgens and estrogen have triggered this abnormal blood chemistry. Killing Testosterone can carry a penalty. I don't truly care-I am happy to be 'comfortably in-between'.

[CharleneT]

I accept that any cat is 'out of the bag'. my prescriptions are literally public information. The Oncologist's nurse said that anyone with access to the specific data base could look up by name-mine is unusual-not 'John Smith' -so any attempt at concealing records fails. . . .


Actually, your info is not public information. It is shared between medical providers if they are directly involved in your care, and for good reasons. These days, when you first start using a specific provider, they will normally have to sign a release form for your records. Once that is signed, then those involved with your care can access all your records -- this is a good thing as pointed out above.

At the hospital where I work the other day a bunch of football players came into our ETC. They were all treated for the same problem. 3 different staff members were fired for accessing their records when they did not have a good reason to do so. One woman had looked at one of the players medical record for exactly 1.5 seconds. Very likely she hit it by accident (that is what she said). Even so, they fired her. So HIPPA does have teeth and they do get used.

[Laura_Stephens]

When I said that HIPAA has "no teeth" I was referring to the fact that the US Government has instituted proceeedings or fined almost no one covered by HIPAA. Individuals being fired by their employer is not the same thing.

There is much confusion about HIPAA. 75%-80% of HIPAA regs deal with the formatting of electronic transactions. The remaining regs deal with privacy issues. When one reads those regs, they are very "wishy washy". Compare the HIPAA privacy regs to GLBA regs used in the banking industry. GLBA is written like the 10 Commandants (e.g., "Thou shall do... otherwise one loses FDIC insurance coverage." GLBA has real teeth and has been used to shutdown banks who failed to comply. Ever seen a hospital of a doctor's office shut down because of a HIPAA issue???????