Ask An Oncologist

Did you know that you have the legal right to see your medical records? ALL of your records: test results, X-rays, hospital notes, and even doctors' notes.  Do you know what's in your records? Do you know how to access them?  Do you even want to see them?

What's in your records?

1) Test data (labs, X-rays, scans, etc.) 2) notes written by a medical professional--MD, PA, etc.--during an encounter 3) doctors' orders (meds, tests, etc.) 4) Documentation of encounters including date, time and bills.  

Previously, records consisted of a few hand-written doctor's notes and test results for a single patient, usually
contained in a folder in the doc's office. Today, records are massive and inclusive, due to Medicare, lawsuits and the growing health care and insurance industry's demand for more paperwork. The adoption of electronic records, mandated by federal law in 2014, made it easy to expand even further. Even simple hospitalizations can produces hundreds of pages of notes!

The hope was that electronic records would link all doctors, hospitals and labs so it would be easy to obtain to get life-saving information and coordinate care, and avoid repeating costly tests. So far this has not happened. Records are as fragmented as your health care, with each facility having its own records. Furthermore, most are running computer programs that are incompatible with other facilities. So it's still up to the patient, to request that one office print out and fax the records to another office, or provide a printed copy to hand-carry.

Getting your medical records and finding what you want in them

The HIPAA law of 2012 gave everyone the right to see his or her own records. It required a written request, expensive Xeroxing costs, and long waits to have the X-rays sent. It's faster now with electronic records, but it's still not easy. For more information on HIPAA, and the issues involved in electronic access, as well as concerns of the medical community, check out this interesting post: https://www.cloudwards.net/hipaa-compliant/.

First of all, they are not all in one place. You will need to know the dates of service and which facility to ask (where did you go to get that blood draw? Who did your mammogram 2 years ago?). Each facility has its own rules for releasing records to the patient, and fortunately most larger clinics have offices to assist you. At the very least, you will have to sign a release form and show an ID. If you want your records to be sent to another doctor you will have to sign a release, but they must send or fax them promptly. If, on the other hand you want to get your own copy and carry them yourself to that doctor, it will take longer; you will have to request a paper copy, and a disk with X-ray images.

In early 2014, a new federal law gave patients the right to access their test results directly from the laboratory instead of their physician, as was the custom and law in most places. Many labs are still not comfortable with this request, but you will have to remind them it is your right. You will still have to show ID and sign for them.

If you request ALL of your records from an institution you will receive a huge stack of papers, containing everything from billing records to hourly documentation of your vital signs from a hospitalization. Unless you are considering a lawsuit, you probably don't want all of this; most likely you are only interested in seeing your lab tests, X-rays, and doctors' notes. Finding the information you want is like looking for a needle in a haystack and there is no easy way to do it, unless you have electronic access like your doctor does. You can use the health portal, if your institution has one, to see much--but not all--of the information that you desire.

Your "health portal"

Many health care systems and large institutions now have "health portals," giving patients online access to some of their medical records. You will need to register, and set up a password-protected account to use it, and you may need a code from your clinic.  There may be a smartphone app, too.

Only a portion of your records will be available in a portal. These include the summary of your clinic visits, some of your test and imaging results (not the pictures), a list of your medications, dates of upcoming appointments and scheduled tests. There is usually a link to send an electronic message to your doctor and receive an answer--similar to a text or email. You might be able to access test results, order and other doctor's visits--so long as they occur within the linked health care system.

What health portals do well is facilitate the "business" of medicine. It is easy to view what you owe and pay your bills. The portal keeps you within the system for scheduling tests and referrals, and sending reminders to make sure these appointments are kept.  Yes, they help you spend your health care dollars with their system instead of a competitor.

The bad news: the lab and X-ray reports are visible only after the doctor who ordered them has reviewed them, and only if they were done at a facility linked to the portal. After an office visit, the "clinical summary," which you are given on paper and in your portal looks impressive, but don't be fooled. It contains very little data and does not include the doctor's note. In fact, few portals give you access to the note that the doctor has authored, which contains your history, physical, and the doc's analysis of your case. If you want to see this you will have to make a specific request, usually on paper.

Other concerns with these portals:  your medication list can be out of date or even incorrect. It may be incomplete, including only medicines prescribed at this facility and not by all your doctors. The list of diagnoses may be inaccurate or wrong, or out of date. And your e-messages may not be answered, or may be answered by someone other than a doctor. Having these electronic portals makes clinics lazy -- often they don't bother to call anymore to discuss your results or reassure you.

Patients without electronic access

Many patients are don't utilize electronic records because they are not connected:  they don't use computers, don't have secure internet access, don't know how to use their portal, never set it up--of just don't remember their password. This group includes those in most need of medical services--the elderly and indigent. 

And there are still people don't want to see their records. Perhaps they don't want to hear the bad news from a computer, or just don't feel they can understand the details. They are happy to let their doctor take the responsibility; they still have to be accommodated.

If you are a caregiver of a patient who is under active care but does not have electronic record access, you might be able to obtain "proxy" access, with the patients' permission. Many people do this for their elderly relatives and friends, because it helps them keep track of clinic appointments, medications, tests, and prescriptions. Ask the clinic about it.  

Who else can see your record?

Legally, your records can be seen by people who "need to know," such as those who pay your bills, and other physicians and nurses involved in your care.  There are strict laws regulating who this is and what they can access. Still, many people are worried about loss of privacy, or sensitive details about them getting out. A diagnosis of venereal disease, or a terminated pregnancy, or a cancer diagnosis can be your friend the nurse will lose her job and go to prison if she is not providing care but looks at your chart, or shares details about your medical condition.

Correcting mistakes in your records

You have the legal right to correct errors in your medical records. Because the record is a legal document it cannot be modified, but it can be amended. The amendment will be indicated as such, as well as the date it was added.  You may have to put your request in writing, and they have 60 days to respond to it; if they deny the amendment they will have to notify you; you may still add a formal, written disagreement to the file.

The down side of seeing your records.

Doctors have always had mixed feelings about showing medical records to patients, and most health facilities had strict rules against it until 2012. Docs felt that it is one thing to read a test result, biopsy report, or radiology report, but another thing to interpret it and understand its significance within the context of the patient's diagnosis. That requires a fair bit of knowledge, and an understanding of the medical condition of the patient for whom the tests were ordered.

Without your doctor's input, viewing your records can cause unnecessary worry and anxiety.  A lab test result that is flagged as "out of range" may be normal for you, or even improved. Or the result may be insignificant or meaningless.  (See my recent blog about interpreting your lab results, Are My Buns Too High?).  Another hurdle is the terminology. Medical term are derived from the Greek and can be complicated if you haven't learned the system; many words have similar roots and can be easily confused. For example do you know the difference between a "colostomy" (an external bag for feces) and a "colonoscopy" (a screening test for colon cancer)?  What did your doctor recommend? You can panic if you read this one wrong! Also, physicians use abbreviations that have to be understood in context.  SOB means "shortness of breath," whether or not you are a difficult patient or not!

The physician's tradition of keeping notes secret seems overly paternalistic in this day and age, but we've been taught to do it for the patient's protection, as well as for the doctor's freedom to think clearly and without censorship. Physicians write their opinions and a list of possible diagnoses, many of which are unlikely but still must be considered in the design of a diagnostic approach. It is reasonable to write, "cannot rule out cancer" for an unusual symptom even though the doc can see cancer is highly unlikely. Doctors' notes may also contain an abbreviated description that helps them to remember the patient, but may be considered derogatory or racist: "this is a 56-year old black male who looks older than his stated age," or "this obese, white woman..."

The doctor's opinion will be an honest reflection of his thoughts and assessment, which might anger or upset the patient if seen. A doctor will frankly write that a pain or disability claim is out of proportion to the injury and suspects malingering, or that the patient is seeking prescription pain medications, or there is a suspicion of alcoholism or depression, concern about child or spousal abuse (which must be reported), or worry of sexually-transmitted disease due to promiscuous behavior.

Many physicians are concerned that they will no longer be able to write their honest opinions in their notes for fear of being challenged, sued, or reprimanded by their administration. They will have to deal with insistent patients who want apologies or want changes. And answering frantic phone calls and emails from patients about misinterpretations and misunderstandings can be time-wasters for a physician who is already overworked! Doctors as well as patients have to learn how to be comfortable with these new laws of chart access.

What does the future hold?

Data mining of health records shows great promise in identifying inefficiencies and improving practices so as to provide better care at reduced cost. In addition to the business side of medicine, data mining can also help to improve community health, looking for disease trends or nutrition, for example. Medical research use is just beginning, but is likely to show tremendous payoff in the diagnosis and treatment of disease, and better understanding long-term effects of medication, or uncovering side effects. Protecting patient privacy in these investigations is paramount, and all research of this sort must be don on "de-identified" patient data.

The other challenge is to link electronic records across multiple health systems. Many software firms are already designing programs to do this, but it will be a difficult task, and there is little incentive for large health care systems to do anything that might direct business to a competitor. It would probably require a federal mandate and incentive funding, which is not likely in today's political climate.

Another solution is to store all of the data in the "cloud," rather than in individual health care systems' computers. This will allow it to be accessed readily by multiple providers as well as the patient, avoiding unnecessary duplication and facilitating coordination of care across multiple specialties. Yet worries about hacking and cyber attacks make us all wary of taking this step.  

The ability to access your own medical records gives you the power to get more involved in your own health care. It's definitely worth your while to get to know what's in your medical records, and your rights regarding them.