What if you couldn’t see the dashboard in your car, and only police officers could tell how fast you were driving? What if your bank kept your bank statements on file without giving you access to them? What if you were in school, and your teachers didn’t give you your test results?
You might be uncomfortable with these arrangements -- after all, that information is about you. You might need it in order to conduct your life. Similarly, a previous column pointed out that you may find it useful to have copies of your own medical records, and that you have a right to get them. (See http://hpi.georgetown.edu/privacy/records.html for more information about your rights to your medical records.)
But what medical records do you need to collect? In a perfect world, you’d collect all of them. Since that can seem like a daunting task, start with this more hopeful thought: any records you gather beyond the ones you already have will put you in a better position than you are in today.
One category of records to get is those that relate to health issues you have that noticeably interfere with your ability to lead the life you want. For example, if you would dearly love to keep up with your grandchildren, but you have asthma that seriously slows you down, you might start by collecting records related to care you have received for asthma, allergies, bronchitis, and other respiratory problems.
These records can help you better understand your condition and your treatment history. With this information, you may be able to see patterns -- for example, are there particular times of the year when you have bigger problems than you have the rest of the year? Do you have problems that build on each other? In the above example, do allergies trigger asthma attacks, which in turn set the stage for bronchitis?
What tests have you had over time, and are the results getting better or worse? Have you gotten treatments in the past that clearly did not help you? Have you gotten treatments that were spectacularly successful?
With information like this, you may be able to draw useful conclusions about how quickly you need to get help when a problem crops up, what treatments to agree to and which to avoid.
Note that if you never see any doctors besides your primary care doctor, then there’s no need to decide what medical conditions you want to collect records about; everything will be mixed together in that doctor’s records. But many people see specialists in addition to their primary care doctors.
If you don’t remember the names of the doctors you’ve seen, or testing sites you’ve been to, one source of help may be your insurer’s Explanation of Benefits forms, which you may be able to access online.
One decision to make is how many years of medical records you want to collect. While the answer depends in part on what your medical history looks like, for non-life-threatening issues, you might decide that you just want to collect the most recent 2-5 years. Doctors, hospitals, and other care providers can charge you a fee for photocopying and mailing your records to you, so you might not want to request 30 years of records unless you have a reason to think that the earlier records contain critical information that could change the care that you get.
A second category of records to collect is those that relate to major medical events or episodes. For example, if you’ve had a heart attack or major surgery, you might want to gather records related to those experiences. Doctors you see in the future will inevitably ask you about these events. Having accurate and complete information will save you a lot of time, and can prevent misunderstandings or misinterpretations of your medical history that could otherwise lead to faulty diagnoses, tests, and treatments.
It’s dangerous to assume, “Oh, if I ever need those records, I can always get them then.” Doctors, hospitals, labs, and other service providers have no responsibility to keep their records about you indefinitely. In New York and Arizona, for example, generally health care providers are obliged to keep their records about you for six years after they last treated you. In California, in contrast, while hospitals are required to keep their records about you for seven years, there is no general law about how long doctors have to keep their records.
A third category of records that you might consider collecting are those that relate to any chronic conditions you have that require ongoing management, such as diabetes or heart disease, even if they are under control. These records can help you avoid getting the same test twice in short order, taking treatments that you tried before that didn’t work or that caused troublesome side effects, and so forth.
What types of records should you ask for? A reasonable starting point is to ask for all records including test results and write-ups about x-rays or other diagnostic tests, but excluding the x-rays and other types of images themselves. Unless you have an ongoing medical issue that will require you to bring your x-rays to another doctor, you may find that getting these special types of records simply adds time and cost to your efforts without providing a great deal of extra benefit.
Future columns will discuss how to request copies of your records, what happens once you’ve done so, and what to do about errors you find.