Keeping Track of Medical Records


How many doctors do you have? Two? Three? Ten?

Do you ever wonder if they all talk to each other? If any of them ever communicate with one another? You may be shocked by the answer.

A study published in The Archives of Internal Medicine in January 2011 found that 69% of Primary Care Physicians (PCPs)—family doctors and pediatricians—said that they send information about a patient’s history and the reason for consultation to specialists “always” or “most of the time” while only 35% of specialists reported that they received this information “always” or “most of the time” from referring physicians. And the reverse isn’t much better, with 81% of specialists who participated in the survey reporting that they “always” or “most of the time” send consultation results to the referring PCP while only 62% of PCPs reported “always” or “most of the time” receiving consult reports from specialists.

After reading this study one might well conclude that the more doctors you see and the further the distance between them the greater the chance that they do not communicate effectively about your care. Not surprisingly, the authors of the study further found that “Physicians who did not receive timely communication regarding referrals and consultations were more likely to report that their ability to provide high-quality care was threatened.”

For patients in our community with lymphangiomatosis and Gorham’s disease and their parents this report confirms what many of us have long suspected:


We must take responsibility for making sure our information reaches all of the doctors involved in our care.


The way to assure the availability of those records is to be proactive in securing and organizing those records. You can’t realistically tote around every piece of paper generated by every doctor with whom you come in contact. Nor is that necessary. But you should make it a practice to obtain and share certain information. Fortunately today’s technology makes this task easier than ever before.


Find out who in your doctor’s office is responsible for keeping track of consults and reports and get to know that person. Some doctors will have a nurse who handles these matters while others will rely on a medical records clerk. This person can be your best ally in making sure information gets where it needs to go. Once you are an established patient with a specialist you may not need a referral from your primary care provider (PCP), so he or she won’t know you have an appointment with the specialist if you don’t let them know. So when you have an appointment with a specialist call the person who handles your medical records at your PCP’s office, tell her whom you are going to see, and ask her to send a copy of your most recent office visit notes and lab results to the specialist. Always ask the specialist when your PCP can expect to receive a consult report about your visit then follow up with your PCP’s office to find out if they received the report.


Besides improving communication among your doctors, there are two other reasons for keeping copies of your own records. First there is the issue of traveling for medical care that patients in our community deal with every day. Chances are you will not encounter any serious issues while traveling away from home. But having copies of your records can help should you find yourself needing emergency care while traveling. Second is the risk, though small, of the original records being lost to natural disasters and accidents. Even doctors’ offices and hospitals can suffer fire, flood, and tornado. The loss of records for a healthy person is complicated. For someone with a rare disease it can be devastating. Keeping copies of the most important records is no different than taking out an insurance policy on your house and car.



There are 5 basic types of records of which you need to have copies:


Radiology, Ultrasound, and Nuclear Medicine Tests

In most modern hospitals these studies are stored digitally on computers and placed on CDs or DVDs for easy transport to other hospitals and physicians. When you have testing done ask the technician how to get a copy of the test and report. Some systems can make a copy of the test immediately, but that will not include the radiologist’s report. You need both. So, if possible, go back to the hospital radiology department the following day and ask for your test on disc so the report is included. If you are traveling and cannot wait for the official report you can ask that it be mailed to you when it’s complete. If you or your child has been hospitalized in another city be sure to contact the medical records department before discharge to get discs with all the tests that were done during the hospital stay.


Tests you need copies of include CT, MRI, x-rays, ultrasounds, bone scans, bone density tests, angiograms, arteriograms, lymphangiograms, and PET scans. The reason you need copies of these studies is that often specialists want to see the pictures for themselves and you don’t want to travel several hundred miles (or even across town) only to find the discs were not sent or did not arrive and the doctor you waited weeks, if not months, to see does not have the information needed for a thorough review of your case.


When possible have all studies done at the same facility. This has a number of advantages. The same group of radiologists will evaluate the tests. All the films and reports will be located in one place and you can go periodically and ask for a disc that has all tests and reports for a certain block of time to be put on one disc, saving space and making them easier to take with you. Finally, going to the same facility allows you to build relationships with the people who work there, which takes some of the stress away from having to have testing done.


Pathology reports from biopsies

The physician who performed the biopsy will be able to give you a copy of the report. You should keep a copy so that any doctor who sees you in connection with the diagnosis made from the biopsy can read the report first-hand.


Operative reports from any surgery

It may read like something in a foreign language to you, but the operative report from the surgeon has much important information. Think of it as a road map for new visitors to your insides. It is helpful to a surgeon to have access to reports of operations performed by other surgeons so they can know in advance what happened during those prior operations, especially if they are operating in an area that has already been operated on before.


Results of blood tests, pulmonary function tests, and physical and occupational therapy evaluations

Most of these reports can be obtained from the doctor who orders them. Physical and occupational therapy evaluations are important in providing a baseline and information about progress in therapy. You need the initial evaluation and then ask for a copy of the report when therapy ends. You should ask your pulmonologist for a printout of pulmonary function tests every time they are done. If you go to a hospital respiratory department for the test ask the doctor to include in the order for testing an instruction for the respiratory therapist to give you a copy. (The original printout is easier to read than a copy of the faxed copy the doctor will get.) Deciding which blood tests are important to have copies of is not always clear. In general, if the test results are normal, you probably do not need to have copies of them. And if there is a value that is consistently abnormal you really don’t need a copy of every time the test is done. A copy of the most recent report with a note that the value is typically abnormal will be sufficient.


Discharge summaries from hospitalizations

These are reports that provide the basic information about why you were in the hospital, what happened while you were there and your condition at the time of discharge, and the instructions the doctors gave for follow-up. It is especially important to have this when being discharged from a hospital away from home so you have it while you are traveling home.


There are several ways to store these records. Most scanners will allow you to save scanned pages as PDF files which you can then save to a document file on your computer. PDF files can be read by any system, so this is the ideal format for your digital medical records. Be sure to keep printed copies of these records in case of computer crashes or loss of your phone or flash drive. Keeping them in a 3-ring binder with vinyl sleeves to hold the discs of your scans is the simplest way. Use dividers to separate each category.


Keep these records together with a summary of your medical history. (For information about how to create your own medical history summaries read our post Personal Health Records.)