My medical record says WHAT??? Part Two: What Now?

In part one of this series, I posted a story about how my medical record was messed up.

Briefly, a young doctor (probably an intern), while evidently practicing patient interviewing skills, had asked if I ever used street drugs. I told him, “No, but …” and continued with a story of domestic violence capped with being slipped drugs, rather like contemporary stories of roofies. The young doctor marked the answer to the question as “Yes”, which began years of misunderstanding and miscommunication between me and the local healthcare providers. I didn’t know it at the time, but it could have also impacted on my ability to get future health insurance!

Since posting that story, a number of people have contacted me privately asking for the rest of the story, or wondering how to get errors like that changed. One of the friends who contacted me was particularly eloquent, and has given me permission to share our conversation, lightly edited, and blinded for privacy.

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FRIEND:
I saw your video, and I am so sorry that happened to you. How ironic given your line of work — and your character, which is so far from what the doctor portrayed.

So what do you do now? I had an issue where a misdiagnosis made its way into my medical record and was never corrected by my doctor, who then retired. I was told by another doctor that there was no way to get that information removed from my record, even though it was erroneous, because medical records can’t be altered.

Is the only solution to request (and in some cases pay for) copies of our own records, then show only the pertinent/accurate ones to a new provider? And what about automated systems that transfer information from one provider to another through hospitals and networks, even without our explicit understanding that that is happening?

ME:
How I solved it that time was to move to a new city and refuse to have the old records transferred. Yes, that is an extreme solution. Glad it was an option for me. In the future, with the EHR, yes, that solution will no longer be possible. Scary & good at the same time!

I was talking with a friend this morning about how the charges are so unfair, and create barriers to this information, especially for people with disabilities. They often charge by the page, and for people who are most ill, most likely to have errors in the records, they are also those who are least likely to be able to afford to get the info to fix them!!!

I’m blogging about this now, and will include some resources for fixing errors. Such as it is. I may quote you in the blogpost, if that’s OK, but will blind it so no one knows who said it.

Definitely not a perfect world!

FRIEND:
My health history has been full of rare and complicated conditions. I actually think there have been more than a dozen misdiagnoses as people have tried to suss out what’s going on with me over the years.

The narratives and profiles doctors create are also highly problematic, since they create a story and picture of a person — and that picture is neither being written by someone who knows the person nor by someone who knows how to write. I am always frustrated to see how doctors portray patients in their narratives. Biased and nonobjective are two words that come to mind — both the opposite of what medicine aspires to be.

I think I am going to request all my medical records from key specialists, cull them for what’s current/pertinent/accurate, and then create an executive summary for each specialist, which I will add to the records I submit to new providers. This way, there will be contextualization and continuity at a glance, without the provider having to wade through everything.

I also think I am going to request a copy of any report from any meeting with a doctor at the time of service. I’ll make a form letter and present it each time I am seen so that the provider knows I will be reading what they write in their records and holding them accountable for their assessments and characterizations. I can also address issues as they arise, and I will know right away whether this is a doctor I should keep seeing and entrust my care to.

Please do feel free to quote me. I’d like to remain anonymous, mostly because I don’t want to world to see me as ill and feeble.

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Isn’t that absolutely beautiful and amazing? My friend is an extremely talented writer, as you might guess from the small example above. I love her creative and insightful ideas about how to proactively combine medical record review with improved communication in a participatory medicine approach. I’d like now to expand briefly on some of the above.

My story of trying to change the medical record error wasn’t quite as simple as I made it sound in the conversation above. First, I did try asking for the error to be changed, working through the system the way you are supposed to do. There are mechanisms in place to change medical errors. At least, there are supposed to be. Remember the error said that I was a street drug user. When I asked to have that corrected, the response was along the lines of, “Well, you WOULD ask for that, wouldn’t you?” with a tight, suspicious glare.

It was only after trying and failing to work through the system that I went so far as to discard my medical records in a move across state lines, and was (in the future) extremely careful about not being 100% completely honest and accurate with my doctors regarding questions like the one above. I am a compulsively honest person, to the point of being almost OCD about it, so to withhold information when directly asked is extremely hard for me to do. I have to stop, pause, translate the question in my mind into what they really want to know instead of what they are asking, and then I can answer the second question. Instead of, “Have you ever taken street drugs?”, I answer, “Have you intentionally chosen to take street drugs?”, knowing that if I answer the specific question they ask, it will only confuse them, confuse my medical records, and will serve no useful purpose relative to providing appropriate care.

This all happened many years ago. With the heavily electronic environment we have now, this solution (leaving the error behind) is really no longer an option. Institutional memories are connected and shared, medical records are electronic and follow you from place to place, sometimes with or without your consent. This is usually actually a good thing! Imagine a situation when someone is on vacation or a business trip and is in an accident. There is no one with them who knows their medical history, and they are unconscious and can’t be interviewed. Having a way to pull up their medical record may very well save their life, and prevent giving them a medication or treatment that would endanger them. This is especially important during disasters and crises, such as Hurricane Katrina. The idea of a persistent medical record that is with you where ever you are is such a good idea that some individuals are going to extremes to make this happen, even choosing to have RFID chips implanted in them with info to access their medical records.

Verichip – Save Your Life – Harvard CIO, Dr. John Halamka

There are also truly excellent arguments for not removing medical errors completely from the record, but correcting them through amendment. One of the most important is that the medical record is the legal document that serves to justify (or not) the treatment decisions made by the healthcare team.

“Suppose that a physician orders a pregnancy test on a patient before administering a variety of drugs known to cause birth defects in the fetus. An incorrect result is recorded in the patient’s record, but subsequently discovered. The patient might well have begun treatment prior to the correction of the lab report. In such a situation, it would be important to the physician to be able to prove that the initial (incorrect) report on which he relied, existed. It is also important that a corrected report be brought to the immediate attention of the physician.”
Samaritan, Georgette. Correcting Errors in the Electronic Medical Record. (PDF) http://www.magmutual.com/mmic/articles/Correcting_Errors_in_the_Electronic_Medical_Record_art.pdf

Misdiagnoses are not at all unusual, especially as my friend described, in the process of medical detective work tracking down the source of a complicated issue. Again, this is important information for future doctors to see — what was tried, what was tested, what worked, what didn’t. Those diagnoses that turned out to be wrong can be invaluable in understanding the clues the body is giving and the progression of a condition over time. What I am not clear on myself is whether the typical medical record offers a way to note after the fact that a diagnosis was updated or refined, and no longer applies for that patient. If medical records do allow this type of notation, then, even though the patient doesn’t like seeing it there, it may very well be important to keep it in the record. What is probably less important are those false diagnoses that were never tested or treated, but were listed as a hypothesis somewhere along the line. Or maybe those are also important, and the question of old misdiagnoses in a medical record is really a cultural difference in the expectations of the patient contrasted with the thought processes and information needs of the healthcare providers? In large part, the importance of the information and possibly changing or updating that information will depend on what is done with it. If, as happened with me, it impairs communication and diagnosis and treatment, if the healthcare professionals lack the appropriate context to use the information appropriately, then it is probably important to remove the information.

AHIMA is the professional organization for persons working professionally in medical record management. They have the most authoritative information on medical records, what should be there, what shouldn’t be there, as well as when, why and how to correct them.

American Health Information Management Association (AHIMA). Legal Documentation Standards (Legal Guidelines for Handling Corrections, Errors, Omissions, and other Documentation Problems) http://www.ahima.org/resources/infocenter/ltc/guide5.aspx

Here are a few more sites that give (in plain English, this time) advice, protocols, tips, what to look for, and how to do it, in case you need to have something changed in your medical record.

Center for Democracy & Technology (CDT). Getting Your Medical Records: Do I have the right to request a correction to my medical record? https://www.cdt.org/getting-your-medical-records#right

Chris Ferland. How to Remove Any False Information From My Medical Records | eHow.com http://www.ehow.com/how_5571621_remove-false-information-medical-records.html

ePatients: Getting Copies of Your Medical Records. http://e-patients.net/archives/2012/03/getting-copies-of-your-medical-records-rule-resource-info-from-cdt.html

Privacy Rights Clearinghouse. Fact Sheet 8: Medical Records Privacy: https://www.privacyrights.org/fs/fs8-med.htm

** Trish Torrey. How to correct errors in your medical records. http://patients.about.com/od/yourmedicalrecords/a/howtocorrect.htm

US Health & Human Services > Health Information Privacy > Understanding HIPAA Privacy > For Consumers > Your Medical Records http://www.hhs.gov/ocr/privacy/hipaa/understanding/consumers/medicalrecords.html

If you, like me, approve of the idea of reviewing your medical records and working to improve communication & dialog with your clinical team, you might also be interested in the Society for Participatory Medicine, or their weekly Twitter chats under the hashtag #S4PM.

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UPDATE September 5, 2012

I just found a blogpost parked in draft that was supposed to be this one. In it I had some additional links, so I thought I would add those on to the end, just for posterity.

HIPAA: Lesson 4 – Reading 837 Error Reports and Making Corrections
www.hipaa.ihs.gov/835_837/newsletter4/04_Reading.ppt

Trisha Torrey: Medical Records, Privacy, Accuracy and Patients’ Rights
http://patients.about.com/od/yourmedicalrecords/a/medrecordshub.htm

University of California: Legal Medical Records Standard (PDF) http://www.ucop.edu/ucophome/coordrev/policy/legal-medical-record-policy.pdf
Excerpt:
“When correcting or making a change to a signed entry, the original entry must be viewable, the current date and time entered, and the person making the change identified.”