Obtaining Medical Records

[PaulC]

Why is it so ridiculously difficult for most of us patients to get copies of our own medical records?

After all, banks have no problem giving customers financial records; police bureaus have no problem giving citizens police records; lawyers allow us to see the wills and contracts they draw up on our behalf; insurance salesmen furnish policies. Why do hospitals and physicians seem to have such a hard time making a few printouts of the personal information about ourselves that we own?

I wonder if Dr. K or any of the other physicians or medical personnel on this network can provide us with any insight on this. I'm sure nobody on this network is themself guilty of record-hoarding, but I imagine someone must have some insight into the recordkeepers' point of view.


My own personal way of circumventing this is to use a sympathetic doctor as a conduit for receiving my records. Her office asks to have faxed to them all medical records on me, "including but not limited to [named report], [named report], ...." I provide the facility with an executed original HIPAA-standard release-of-information form, naming only my doctor and myself as recipients of all information from the beginning to the end of time, and then just pick up the faxes from her office. Works like a charm, but it feels like subterfuge.

[Mike]

Very neat Paul. ... Mikey likes it! :O)

My experience is that the record hoarding thing is right up there with the staff who respond to all inquiries with, "I will ask Doctor about that" or similar. (Note: not "I will talk to Dr Jones ..." or " I will talk to your doctor ... .").

In certain physician offices a culture of "only Doctor can make decisions" is king. With that can come a behavior that I can only describe as "Knowledge is power." In other words, there is an utterly fallacious belief that if only Doctor has the right to see all the records, then the patient is (a) tied to that doctor and (b) easier to manage because he/she "knows less."

This cultural behavior is by no means restricted to urologists, of course! And I am convinced that much of it is driven by an unreasonable fear of legal action. Again, in my limited experience, patients who have a willing sharing of all relevant data, charts, etc., with their physicians are highly unlikely to sue, even if some thing goes wrong, because they feel as though they are part of the decision-making process. When data and information are withheld there comes an increasing sense that one may be being misled.

Actually, I believe this perception is supported by actual data related to physicians who tell patients and family members when things do go wrong in surgery or the ER, as opposed to just trying to cover it up. The explanation and apology by the physician him- or herself is highly valued. If the hospital administration tries to provide the explanation and the apology, it is immediately suspect.

[Arnon Krongrad, MD]

Total speculation, but surely fear of litigation and exhaustion are factors in some of this phenomenon. I will say that when I am asked for records Hope often asks me to review the chart first. This is because often charts are often voluminous. She wants me to identify documents that will be most useful, eg op reports, path reports. I also know that when it comes to getting medical records to my office, a patient can have no better ally than Hope, who is relentless in breaking down the barriers. Sounds like Paul has latched onto the mechanism I am describing: go through a friendly doctor. I agree: it should not be necessary.

[Leah]

Mike,

I didn't feel like venting but this really hit a raw nerve. I was shocked by some of the things you had to say but I know from experience that they're true. I want to reinforce your point of view about the role the fear of legal action plays in doctors withholding records.

My husb and I had a fine relationship with his surgeon until (urged by the online PC punditocracy), I sent him a polite letter asking for my husband's basic medical records. Said I wanted to have them on hand and also might work up the courage to do a nomogram.

The records weren't forthcoming in spite of repeated letters and phone calls. It was completely out of character. Then a month later, my husband had a PSA test, done by his internist (for convenience), which was positive. We immediately left a msg for the surgeon. He never called back. My husband and I were mystified. We had never as much as exchanged a bad glance with this doctor. In fact, I had referred a number of patients to him.

Anyway, with the PSA rising, we decided to consult some oncologists at the recommendation of some PC "elders". But I couldn't even schedule appointments with the doctors because *we had to have all of T's records in hand and we were still missing some.* We were paralyzed.

Eventually, in dribs and drabs, we got most of the records. I was going over the surgical path report very carefully the night before our first meeting with the rad onc and it occurred to me that maybe the words "tissue inked at the margin" might be medicalese for a positive margin. I was right. That was the first time we found out there was one -- 18 mos. after husb's RP. The rad onc confirmed it the next day. The surgeon had assured us all the margins were negative. We never had any doubt about that.

Also, I tried to get a consult at MSK and they asked us to produce an "Operative Report". I obtained it from the surgeon and read it. We had been told that the doctor had spared both erectile nerves, but the report said something about "nerve bundles being excised on the left side".

Finally, I asked some PC elders for a possible explanation of why we had to go through all this agony to get husb's medical records and why we were given wrong information. The only explanation that made any sense was this: "The doctor probably felt threatened by your request and thought you might want to sue him." Who knows, maybe the word "nomogram" spooked him -- I hear this term all the time from obsessives online but the knowledge of these things is probably limited to a rarefied few. The only other thing I could think of was that maybe when we first me and chatted I told him I was a lawyer -- not that it should matter. If all this is true it's very sad indeed. I have never sued *anybody* in my life nor lodged a complaint against any doctor.

You also mention that some doctors cover things up if something goes wrong with the surgery. I have trouble accepting that. My own doctor opined that the the surgeon didn't tell us the truth "because he didn't want to look bad". Anyway, this deprived us of potentially lifesaving adjunctive treatments or at least we would have been more vigilant about follow-up.

I am hesitant to recommend that patients request their own medical records because I fear that the doctor may see their request as a "declaration of war", as ridiculous as it sounds.

I once wrote that I finally "earned my stripes as a cancer warrior" when I finally got hold of T's medical records. That's sad, considering everything else we went through.

Leah
.

[Arnon Krongrad, MD]

You raise a third aspect beyond fear and exhaustion: vanity. This gets to the ten criteria for surgeon selection point about baseless self promotion. In his public pronouncements, is the surgeon objective? In his CME courses is he fair?

The trouble is that patients newly diagnosed are not equipped to ask these questions. It is one reason sites like this are most valuable to the man who just got his biopsy report. The old horses gain least, I think.

Surgeons are people. They sometimes have bad instincts. You are right about disclosure of complications but I can tell you it's hard to do. Not fun at all. Someone trusted you fully and is now looking you in the face disappointed. To get him (and her) through the next phases requires trust. Which requires communication. Not every surgeon understands or cares. People being people.

Funny about operating on lawyers. One of my early LRP patients was Bob Garner. Bob was local counsel in Amarillo when Oprah was sued for slandering beef but he was mainly a personal injury lawyer (he also had one whopper case involving the sperm of quarter horses; a whole big to-do). When Bob was diagnosed he fell into panic. As a smoker, he knew more than most how wrong things can go with surgery. Irony? Maybe, but malpractice lawyers know about risk better than most of us. As patients they are very well informed and thus nearly ideal.

[Kathy Meade]

I am confused. What do you mean by, In his CME courses is he fair?

[Kathy Meade]

Years ago I worked at a hospital and the doctors only wanted the records released to the patient through the doctor so their would not be any misunderstandings of what the records say. They wanted to be able to answer questions and explain the material in the record. Things seem to easier today and when I wrote my chapter for the most recent ACS book on prostate cancer I suggested that patients request copies of their records and keep them in a file that includes both the medical records and other important information. Lance Armstrong Foundation in their free LIVESTRONG Survivorship Notebook Will help people to organize their records including their medcial records.

To obtain a notebook go to this link.

http://www.livestrong.org/site/c.khLXK1PxHmF/b.2662947/

[Mike]

Just so we are all clear, I think it is absolutely correct that the doctor should review medical records before they are given to the patient, another doctor, an insurance company, you name it. The doctor is responsible for the accuracy of those records and for making sure that the correct records are being distributed to appropriate people who are entitled to see them. However, if the doctor has a well organized office and good staff, this should be a relatively routine activity. (Which doesn't mean that it always is!) Clearly not every physician office has a Hope!

[PaulC]

I gotta say, I'm totally with Steve on this.

I requested and received the surgical pathology report from the hospital where my RP was done. I was surprised and dismayed to see a different (and more complete) path report when my doctor requested it from the same hospital.

My position is that if someone is "shielding" me from information about myself, they'd better have an excellent reason, and they have a duty to disclose that such shielding is occurring and why. I understand that people make mistakes, and they can't spell, and they sometimes make mistakes when they try to make corrections - I'm a grownup. I truly can't think of any reason why the records should have to be reviewed before being sent out, unless there's something to conceal.

[Kathy Meade]

Paul,

At the hospital where I worked, the records were never changed. If they did they would be in jeopardy to lose accreditation. It has been a while since I was an admission director but It was more a concern that patients would not understand all the words or misinterpret the meaning. If hospitals are producing a patient version of records then patients are better served getting them from the doctors office.

[Mike]

Please understand that in my prior post I am not in any way suggesting that doctors should modify records or shield people from anything. All that I am saying is that it is the moral and ethical (as well as legal) duty of the doctor to make sure that the records are correct before they are passed on to anyone (the patient included). How would you feel if your records got sent to someone else (just as an example)?

It is solely for that reason that the doctor should review the records.

[Steve J]

Well, kids, I do not believe that anyone, MD or otherwise, should have the power to decide what I should know about my medical record.

As I understand it, civilized jurisdictions are in agreement.

Being patronized is anathema. I decide what is best.

[Mike]

Hmmm ... Did I just get patronized? I thought I stopped being a kid well over 35 years ago. HUGE :O)