Rights and Barriers

A story by Alexandria Hein published May 28, 2015 in the Health section of FoxNews.com includes this quotation:

The patient has the least access to the data, but has to make the most medical decisions [emphasis mine]. It was my decision to do surgery or radiation or chemo, what type of chemo, it’s all in the patient’s hands. Usually they just follow what the doctor says, but they don’t have that same access to the data that the doctors do,” he said.

The specific details of this story, which have to do with the Canadian man who 3-D printed a copy of his brain tumor, are not as important as the problem noted in the above quotation. The first sentence in boldface identifies the crux of an endemic problem in medical care in this country.

Why don’t patients have easy access to their complete medical records? Whose records are they? The privacy section of HIPAA (Health Insurance Portability and Accountability Act) does provide a structured way that a patient can get access to the details of their medical record. (See also my blog post “Think You Know What Happened to You in the Hospital? Think Again!”)

This involves filling out a one page somewhat tricky form, submitting it to the health care provider and waiting for up to 30 days for a response. If you find errors in your record, which is not at all unusual, the law also provides a mechanism to request a correction. In this case, the health care provider has up to 60 days to deal with it.

The tricky part comes in a section of the form in which you must identify the specific type of records that you want, not only by date but also by the types of information. For example, if you just say “my records from the past two years” you may or may not get everything. You need to specify exactly what you want by using terms that may be unfamiliar to you, For example, if you had x-rays made then include the term “radiographic images.” If there were ultrasonic exams use the term “ultrasonic reports.” You must be as inclusive as you can possibly imagine using terms such as “chart notes” (this represents what the doctor actually wrote about you as opposed to what you think he may have said). A synonym for chart notes is “clinic notes.” Other useful terms are “doctor’s findings” and “consults.” If laboratory studies were done then include words such as “all lab reports including blood work, urinalysis and any other studies including pathology” (if biopsies were done). The clue is to be as broad in your request as you can possibly be to prevent the provider from deciding for you whether to withhold some information.

Some medical practices now offer limited access online for patients. With the exception of a few enlightened healthcare facilities these are abbreviated extracts from your visits to your doctor. They may offer access to your lab results although it is unlikely that they will be very rapid. Often they will not appear for your own access in less than five to fourteen days. They may list the diagnoses that your doctor made — check these carefully. Now that most doctors use computerized files and fill out these while they are talking to you it is quite possible  they will either mishear or select the wrong check box and  enter an incorrect diagnosis. Almost certainly except as noted in some cases they will not include what the doctor actually wrote in your file about your visit.

Full information is vital for the patient to have. It provides you with an opportunity to correct egregious errors, whether from a simple miscommunication or transcription errors. Just as importantly, in order to make informed decisions about your care you need all the information about your case as the quotation that started this article so tellingly points out.

If physicians are really interested in having their patients be a part of their care why make them go to a lot of extra trouble to be a fully informed? Why not simply offer patients at the time of the visit a form with a Yes/No check box saying something such as “I am requesting a copy of my complete medical record including all chart notes and discussions as well as laboratory results if any from this visit.” The form could include the type of acknowledgment of privacy requirements found on the standard medical information release form. Other legalese absolving the doctor or practice from liability for releasing the information to you could be added to the form.

This is your right. I have never been offered this option. Any blog readers are welcome to report a different experience. Instead, a new patient is shown a Privacy Rights information sheet explaining your right to examine your record which he or she must acknowledge receiving. Often this will be in a transparent holder and unless you request a copy to retain you will not even be given that. If this were not a requirement of HIPAA it is doubtful that a patient would even be informed of their rights.

One reason for not giving patients this easy way to be fully informed is that many doctors simply do not trust their patients. These doctors believe they must act as “Gatekeepers” between what they know and what can safely be shared with their patients. Another reason comes from an inherent contradiction between the government-passed Privacy rules in HIPAA and the barriers introduced by requirements for a second step beyond what could be as simple as described above. This is the reason for the second noun in the title of this blog— barriers.

With one hand the government offers to protect your health information privacy. With the other, instead of incorporating simple ways to get your own information, they introduce a barrier to access with a cumbersome and lengthy process allowing a doctor to drag out the release of your information, even an out for the doctor to refuse to release it (which fortunately at least is subject to third party review).

The more the government takes control over the healthcare system in this country the more it is in the interest of the government to restrict your access to information. Throwing up barriers to make it more difficult for you to access information is a tactic that has worked very well to increase the number of “low-information voters.” On the other hand while not directly relevant to this particular blog post the liberal/progressive element in the government is interested in removing some barriers such as those that might, by requiring identification as a citizen, prevent illegal aliens or others ineligible to vote in elections from padding the election rolls. Who knows, it might even restore the old concept of One Person One Vote as opposed to the method endorsed by the slogan that characterizes Chicago politics, “Vote Early and Often.”