Electronic Medical Records
ICD-10, ICD-10 CM, and ICD-10 PCS
The Supreme Court cases Griswold v. Connecticut in 1965 and Roe v. Wade in 1973 say that an individual's right to privacy in matters of the human body is protected by the United States Constitution. Individuals in the United States have the right to be let alone to make their own decisions. We need a case to make it clear that this applies not just to our bodies but to the records kept about our bodies in medicine as well. Patients need the right to be the final arbiters of what is put in their records and what is either taken out or not put in.
If a nurse-in-training make seven attempts to insert an IV without succeeding before the patient stops the nurse and calls for help, and the seven punctures become infected, when the patient later finds no record of that or antibiotics administered to kill the infection, the patient should not be required to make an appeal to the board of the institution where this happened in order to see if they will allow it to be put in the record. No one involved in it will admit it. They already have conspired to cover it up. They will continue to conspire to deny the cover up as well. The institution's review will find nothing to corroborate the patient's claim.
Patients used to have the right to have whatever they presented for inclusion in the record to be included.
The latest HIPPA laws have taken away that right.
They also need the right to remove data. The first response of medicine to iatrogenic injuries is to claim that the patient is delusional or just trying to cash in on frivolous claims. When those labels are made part of a patient's record, it can become impossible for the patient to get treatment for the injuries.
In "Privacy and Freedom," a foundational book on the subject by Alan F. Westin, individuals have the right to determine how much of their personal information is disclosed and to whom, how it should be maintained and how disseminated. In part the book argues that privacy enables freedom.
Consumers are entitled to withhold data, and are equally entitled to make it available. So should be patients, but currently they are denied the right either to withhold or delete data or to include it. They cannot decline to have it in the record at all. They can decline to have it shared, but even that is only if health care professionals agree with that decision. Patients routinely are asked to sign forms that say that if they decline to have their data shared the request will be reviewed and denied if the health care professionals believe it is in the patient's best interest for it to be shared. So if an angry health care worker punches you in the mouth leaving you with one less tooth, and covers that up by saying that you arrived with the tooth in your hand, you cannot decline to let them broadcast that lie about you.
If you ever have tried to get iatrogenic injuries healed, you know that there is nothing about that example that is out of the ordinary.
These misdiagnoses can thwart a patient's attempt to get care or insurance. Currently, if a caregiver injures a patient, whether by accident or intention, and seeks to cover it up, which is the standard response when things go wrong (93% of what goes wrong in medicine does not get in the record - see Medical Reporting), in order to silence the patient the caregiver sometimes will put into the record information, whether true or not, intended to make that sure no one finds out. A note claiming that the patient is difficult and/or crazy will follow that patient wherever that patient goes seeking treatment for the injuries.
Patients need to be the final arbiters of what is in their records. Health care professionals argue that this would diminish their ability to help the patient, but injured patients understand how it also could diminish their ability to continue to harm patients. Patients are the ones who should have the right to decide on which side of that line they want to fall and when. Currently the line moves to protect the interests of people in medicine. Who is medicine for? Providers or Patients?
The "10" means its tenth revision. ICD stands for the International Statistical Classification of Diseases and Related Health Problems. It is the list of abbreviations that caregivers use to describe you in electronic records. It includes codes not only for diseases, but also for complaints, social circumstances, signs and symptoms, abnormal findings, and external causes.
There also is a DSM, which is the Diagnostic and Statistical Manual of Mental Disorders. So caregivers can look at you and decide you are wacko, perhaps exclusively because they need to make others believe that in order to protect themselves, by inserting in your record pejorative signals that a patient would have a hard time understanding were the reason no one would diagnose his/her injuries.
One can hear professional caregivers responding with sentences beginning with "Hopefully" and ending with thoughts about how rare such a thing would be. If they had any idea how frequently patients are injured and what happens to those patients, they would have to invent new rationalizations for keeping things this way.
The World Health Organization (WHO) began work on the ICD in 1983. They make detailed information about it available online and provide a browser designed specifically for searching it. It has more than 14,000 different codes and the ability to track new diagnoses.
Besides the International version of ICD there is the national Clinical Modifications of ICD. These go into more detail. The US ICD-10 CM has around 68,000 codes. The US ICD-10 PCS (procedure code system) has about 76,000 codes. You can see why they need a special browser.
According to the New York Times there are codes for injuries incurred in opera houses and injuries incurred while knitting, and even one for sibling rivalry.
Can anyone find one that labels previous diagnoses as misdiagnoses, or one for iatrogenic injury, or one for getting injured intentionally by an angry doctor, or by a nurse who was not properly trained? Is there a code for getting groped by your health care professional? Is there anyway to tie the harm a patient suffered to the person or facility responsible for it?
If there is no code for it there will be no record of any of that, just as there isn't now. Medicine likes it that way and who do you think was at the table when the codes were being thought up? Not injured patients.
If you have a moment and want to contribute to the understanding of this issue, get that browser and do some searches to see if there are any codes for these problems or for any other problems of patient harm and then let me know about them. If there are, we need to make sure people can find them.
BTW, see if there is a code that could mean something like Malignant Neoplasm of the Gluteus Maximus.
Getting Electronic Medical Records
Controlling what may or may not be in your records is particularly difficult in a world where you cannot even be sure what is in them. Digital records bring new ways of stacking the odds against your getting what you need. You have the right to get copies of them, but they are not required to keep them in a way that enables you to decipher them.
There are no standards in the industry for how the records are kept. Different medical providers have different databases and different ways of making things difficult for anyone but themselves to understand them. Alarm bells ring when someone asks for records in their native file format. That normally would include the metadata that should reveal whether the records have been altered. Alarms also go off in their minds when loggin information is requested, or audit trail information, or the data dictionary that would enable making sense of the data.
I have had a state medical board decline to provide me with a key to the acronyms that would allow me to understand their records even when they were not electronic. They are required by law to provide those to anyone who asks, but, as is common in medicine, no one is in charge of enforcing the laws and there are no penalties for violating them. I would have had to hire a lawyer to pursue getting the information through sunshine laws.
Digital Data is Eminently Manipulable
Want to try it? In most browsers if you hit Cntrl + u right now it would show you the metadata behind this webpage (opens in a new window that you close to get back here). If you copied and pasted that into Word Pad, or a similar program, you could change that in any way you wanted before turning it back into a webpage and giving a copy of it to someone.
Most providers would prefer sending a pdf of electronic records. No metadata travels with that and the paper version can be modified before sending it.
This is a new area and things can vary from one place to another, but some lawyers say that requests for such records should be made to the hospital's Legal Counsel or Chief Information Officer and not to the Records Department. That might be true for lawyers, but I suspect a patient would get further with the records department. Especially if the patient had prepared ahead of time innocent answers to questions like "Why do you want them?" - a question they shouldn't be asking in the first place, and "To whom do you want them sent?" as though handing them to the patient right now isn't an option. The delay in receiving them is time you don't want them to have now that they might be worried about why you want them. Unfortunately, it could legitimately take a while for them to make a copy. And it is not uncommon to call ahead and say you want to pick up your records and ask if a copy could be ready tomorrow.
If they ask why you want them, one possible response is to say that when other doctors ask questions about previous procedures you've had, you like to be able to answer articulately when they ask additional questions about it.
It can be worth the while of a patient to go to some other hospital or clinic where there are records the patient doesn't really need and request them in order to get familiar with the questions and obstacles ahead of time. Practice overcoming them can be a good thing before going for the records you really want - like what forms to have already filled out and hand to them while asking for them so matter of factly that it fits their routine and they set it in motion without thinking.
If you try to get them from the people some lawyers recommend, you are supposed to tell them that you need the data that reveals the date and time of when personnel made additions or alterations. I suspect that if a patient did that the patient would be told something nonsensical like that HIPPA laws do not require that they provide those. They do make that, and other nonsensical claims - nonsensical because the fact that HIPPA laws do not require it has nothing do with whether or not they have to do it. I have had a doctor tell me that HIPPA laws prevented him from giving me my records. I knew the law better than he did and corrected him, but he still refused. It's a tough road for patients.
HIPPA laws are supposed to protect you,
Even if they do not refuse or make up nonsensical reasons, there are other ways they can avoid making information available. If they do not maintain a data dictionary that could be given to you the metadata will be useless. There has to be some kind of key to the tables. A comma delimited file could be requested instead, but if you have to view it in a spreadsheet type format no one will be able to decipher it. They might say that that is the format in which they always send it out, and that might be the truth, but that might mean only that they always get away with never enabling anyone to decipher the data.
If you have gone through the process elsewhere first, with records you don't really care about, you might have figured out how to get your records in a way so routine to the clerk in the record department that it does not trigger worries that could cause them to make anything more opaque, like telling you it will take a few weeks during which time they can alert the doctors or nurses who made the record so that they can advise whether to make it difficult for you. One time I got non-digital records so quietly that the doctor didn't know I had them before he got worried and altered them.
Conflict of Interest
They have a disincentive to keep these records in the first place and a disincentive to keep them in a way that would allow you to understand the information in them. There needs to be an entity outside of medicine collecting its own information in order to have something to go on in order to understand what kinds of things should be in your data whether or not it is in your data. With that, over time, it might be possible to make cases that require them to keep records that make medicine less opaque.
This will never come from within. From within they believe in voluntary transparency, which is about as self-serving as a group's vision can be.