If you’ve never experienced a major medical crisis, you’ve probably never thought or worried about your medical records. Before I got sick, I believed doctors quickly diagnosed patients, medical mistakes rarely happened, and medical professionals were the keepers of my medical history.
Then I fell ill with a condition doctors couldn’t identify. The experience forever shattered my beliefs.
For months my husband and I navigated a complex medical system in search of answers. We stumbled through a maze of appointments, procedures, and exams on a quest for clues and explanations.
Over the course of six months, my primary doctor sent me to dozens of specialists. Each time I encountered a new doctor, I retold my story. Each time I expected that doctor to have a copy of my vital lab results and medical findings, but, somehow, this failed to happen. Instead of seeing my notes, I found empty files and blank notebooks.
Missing Medical Records
Where were my medical records?
“Your CT scan results aren’t here,” one doctor said, shaking his head.
“I don’t have your lab results,” another told me.
How could they diagnosis me without my medical records? My primary doctor’s office assured me they sent the paperwork. The hospital faxed the details. Why couldn’t these doctors find my reports?
“I don’t have that information,” the specialists would say. “Where did you have your tests performed? It appears your doctor never sent us your medical records.”
“We’ll just schedule you for another test,” some told me.
Another test with radiation risks? Should I undergo a new CT scan because the doctors couldn’t find the results sent over from a different hospital? It sounds ludicrous, but it happened.
I grew anxious and worried as my health deteriorated, but I had no idea how to move through a system where doctors couldn’t even view my medical reports.
I was desperate for answers. So desperate that I willingly exposed myself to harmful chemicals and radiation to get them. It was utter madness.
Obtaining Medical Records
After two or three visits with specialists, I discovered a dirty truth about the medical field. Many doctors do not have a reliable way to transfer medical records between hospitals, specialists, facilities, and other medical professionals.
The world has witnessed profound, far-reaching technological advances, but medical recordkeeping has not experienced those same gains. The medical community still relies on archaic fax machines and phone calls to transmit critical information.
They also rely on support staff to retrieve reports from fax and answering machines. It’s easy to see how vital medical records can get lost in the process.
One thing became abundantly clear in my search for answers. To achieve a diagnosis, I needed to take charge of my health. It wasn’t my doctor’s job to relay all of the information. It was mine.
I needed to maintain a medical log and gain full access to my medical records. Then I needed to carry those records to every doctor’s appointment.
I didn’t want to worry about paperwork in the middle of a medical crisis, but I had no choice. The medical system couldn’t reliably transfer my information, so I had to take matters into my own hands.
I began collecting and retaining every vital piece of medical information I could get my hands on.
Keeping a Copy of Your Medical Records
At the start of my medical journey, I wholeheartedly believed that my primary doctor would be the bridge that connected me to all other doctors. He would keep my lab and test results and relay them to the specialists who needed to read them.
If he didn’t, it would be easy to ask labs and radiology clinics to send the information. Unfortunately, this isn’t how the system works. Hospitals, doctors, and labs were unable to transfer my medical details. They were constantly getting lost or misplaced.
It was clear; I would need to be the collector of all medical documentation. It was up to me to collect all of my medical records as my medical mystery unfolded. To get doctors to review my medical records, I needed to physically hand out my lab results and exam findings during my appointments.
After all, if my doctors couldn’t review my medical details, they couldn’t correctly diagnosis me. How could they recommend treatment without all the facts?
Medical Release Forms
So, I learned how to navigate the system. Every time I had blood drawn, I asked for my results. After technicians completed x-rays or CT scans, I drove back to the hospital to collect the radiologist’s reports and images.
It’s not easy to figure out which forms to fill out, but I never left a doctor’s office without asking for a copy of my reports. I became proficient at asking for medical release forms upfront. I let staff members know I wanted a copy of my results as soon as they were available.
If they weren’t ready, I made a note to call them every day until they were complete. Then I drove to pick them up because faxing the information to my home was a messy process that didn’t always work.
Requesting Medical Records
It was my job to keep my medical records. I wanted them in my hand whenever a doctor needed to see them.
Without those records, doctors couldn’t view my medical history. Many assumed I required additional testing. They scheduled me for expensive repeat exams, which contained increased risks with each exposure and significantly increased my medical expenses.
The timeline for my diagnosis increased each time a doctor didn’t receive my medical records. As doctors prescribed new tests, I had to schedule exams, drive to appointments, sit through the process, and wait for the results. Then I waited even longer for my doctor to read and interpret them.
In the beginning, I waited for my doctor to call me, but this further delayed my progress. Eventually, I started picking up the reports myself and contacting doctors to let them know they were available. Then I delivered the reports myself.
Digital documentation has improved since I fell ill fifteen years ago. Some facilities can now email you when a new report is ready. Some can even supply digital images of x-rays, mammograms, and CT scans. However, many still use archaic fax machines and mail services to relay this vital information to out of network doctors and specialists.
My body couldn’t wait for this slow transfer of data. I needed answers to save my life, and I needed them quickly. To rectify this problem, I had to obtain copies of my medical records and keep them indefinitely.
How Long Do Doctors Keep Medical Records?
Why do you need to keep a copy of your medical records? Don’t doctors keep a copy of these for each of their patients?
Of course, they do. On average, doctors keep medical records for a minimum of seven years from a patient’s last treatment. Some specialists require an extended retention period.
For example, obstetricians and pediatricians often maintain records until a child is twenty-one or older, and some states like Hawaii require doctors to keep records for twenty years.
But as I stated above, most doctors don’t have a guaranteed way of transferring the information into another doctor’s medical recordkeeping system.
I would wait for weeks to see a specialist. Then I would arrive at the appointment without the necessary data to aid in my diagnosis.
If you’ve never been sick, this might not sound like the worst thing on earth, but if you are ill, you need answers, and you need them quickly.
How Can I Get Medical Records From 20 Years Ago?
Honestly, it makes sense for patients to become the keepers of their medical records. Doctors might keep records for an extended period, but why rely on them for that data? What if the doctor is no longer practicing? What if they sold their practice or discarded records because so much time has passed since you last visited?
Do you want to call a hospital or doctor’s office after twenty years and hope that they still have your records on file? If your doctor is no longer practicing, and seven or more years have passed since they closed their business, the odds are pretty good that your medical history will be lost.
If that’s the case, you’ll need to contact labs, specialists, and hospitals in search of information. You cannot guarantee that those records still exist or that you can easily attain access to them, but you don’t have to worry about that if you keep a copy.
Obtaining Your Medical Records Could Save Your Life
A few years ago, I met a pathologist at a backyard summer party. I told him about my experience with the medical system and my belief that every patient should keep copies of their medical records.
“You are absolutely right,” he told me, “and not just for the reasons you mentioned. You would not believe the number of medical errors that result from the belief that no news is good news.”
“What do you mean?” I asked.
He told me horrifying stories of abnormal test results missed by medical professionals. One woman thought her MRI results were free of defects because her doctor never called her.
Her results fell through the cracks when an office assistant placed her report in the wrong file. By the time the patient began experiencing severe pain, it was too late to operate.
According to the pathologist I met, this happens more often than patients realize.
“No news is good news allows terrible mistakes to happen,” he said.
Most patients assume everything is normal unless they hear otherwise, but that’s not always true. Sometimes the doctor hasn’t read the report.
“I should know,” he told me. “I’ve seen it happen.”
Imagine dying from a medical mistake like this one. It’s not a guarantee that surgery or chemotherapy would save this patient, but it certainly would have improved her odds.
Medical mistakes happen every day, but you don’t need to let easily preventable errors like these occur.
Obtain Medical Records to Prevent Medical Mistakes
You need to take control of your medical records. Obtain copies so you can see the results for yourself. In a perfect world, this wouldn’t be necessary, but the world isn’t perfect.
Why don’t patients automatically receive their medical records and reports? Maybe because it would cost too much money.
Federal law requires patients to receive a copy of their mammogram results. Why don’t laws protect patients by sending other reports through the mail as well?
How Long Should I Keep Medical Records?
You don’t need to keep every single note ever captured by medical professionals, but it is crucial to obtain test results, hospital notes, and lab reports. Keep this vital information indefinitely.
Include your most recent lab results, reports from all medical exams, and summaries from hospital stays. Collect and retain copies of all CT scans, x-rays, MRIs, etc. If previous bloodwork indicates any abnormalities, keep those files as well.
Sometimes doctors are looking at trends in your reports. For example, has your condition worsened or stabilized over time?
Keep your medical details in a place where someone else can access them in case of an emergency and store them for as long as you are alive.
Gather your prescription information. Include current prescriptions and take special note of any drugs that caused allergic reactions. Then let your loved ones know about them so they can speak up on your behalf.
Create a Medical Log
Use this information to create a detailed medical log with corresponding dates and bulleted items. Include actual footnotes from your medical report and highlight the most important findings.
Doctors don’t have time to read through every single report in a complicated case. Create concise details that are easy to step through and explain during your initial visits and refer back to these at subsequent appointments when necessary.
When I fell ill, I created a medical timeline that significantly improved my interaction with doctors. I referenced previous tests and quickly pulled up medical reports from a three-ring binder when needed. This information is invaluable when meeting with new doctors.
Medical Log Example
Here is an example:
- October 09, 2019
- (Notes from the report: Tissue distortion in the posterior outer left breast. There are otherwise no dominant masses, suspicious clustered microcalcifications, or secondary signs of malignancy seen. There is no other significant interval change.
- October 24, 2019
- Follow Up Mammogram
- Normal interval follow-up
- Follow Up Mammogram
- December 1, 2020
- Visited Primary Doctor. (reason: severe pain under ribs, lethargic, could barely get out of bed)
- Physical Therapy Recommended
- December 2, 2020
- Visited Primary Doctor. (reason: dilated veins and swollen mass underarm)
- Told to continue physical therapy
- December 15, 2020
- Emergency Room Visit
- CT Scan
- Diagnosis: Pulmonary Embolism
- (Notes from the report): Single filing defect w/in a subsegmental right lower pulmonary artery branch compatible with thrombus.
- Heparin drip started
- December 20, 2020
- Met with a new Primary Care Physician
- Suggests a VQ Scan of the lungs
- VQ Scan
- Large defect at the left lower lobe does not match previous CT Scan (see report)
Include a list of your prescriptions at the top of this document and update it regularly.
Bring a copy of your timeline and test results to every appointment. If you know you are seeing a doctor that requires images from x-rays, CT scans, or MRIs, bring those along as well. You can obtain these images on a disk as long as you fill out the proper medical request forms.
You Are In Charge of Your Health
The medical system is large and complex. Navigating the waters while you are ill is complicated and cumbersome.
I wish I knew about the importance of obtaining medical records when I initially became sick. I would have saved so much time, energy, and money in the process of seeking a diagnosis.
The next time you need lab work or other exams, ask for a copy of your results and store them in a safe place. Then add the details of those tests to your medical log in a way that is easy for medical professionals to read.
Ask questions if you don’t understand what your results mean, and don’t hesitate to contact your doctor with additional questions when necessary.
The medical system is too complicated for one doctor to maintain all of your medical information. Do yourself a favor and begin storing this information yourself.
How Long Should You Keep Medical Documents?
Medical reports, lab work, surgical reports, and hospital records are crucial pieces of your medical history, but there are other medical documents you should keep too.
Since this is a personal finance blog, I wanted to include additional details about medical bills, receipts, and explanation of benefits (EOBs).
How Long Should You Keep Medical Bills and Receipts?
Your medical records are the most vital pieces of data, but it’s a good idea to hold on to medical bills and EOBs too.
Please note, you shouldn’t keep medical bills and documentation in the same folder as your medical record. Keep these items separately because your doctors don’t need this information to treat you.
If you’ve experienced a major medical event, keep your medical bills for three to five years.
Make a note of when you paid and how you paid each of them. If you plan to deduct medical expenses at tax time, you’ll need to keep a copy of these receipts for three years.
To claim the deduction, make sure your medical costs total more than 7.5% of your adjusted gross income.
If you have access to an HSA account keep your medical bills until you claim reimbursement.
How Long Should You Keep Medical EOBs?
The acronym EOB stands for explanation of benefits. Every time you visit a doctor, your insurance company uses these EOBs to track and process your claims. EOBs typically include a description and medical code detailing the procedures, lab work, routine visits, and exams you’ve recently completed.
Don’t just shred these the minute they arrive in the mail. It’s essential to review EOBs to ensure your doctor is billing you appropriately. Review all charges and ensure that the procedure codes and descriptions are accurate. If you are unsure, contact your insurance company for further details.
You can easily Google for medical codes. Make sure you recognize the procedures and tests. Search for billing mistakes so you can correct them before the bill is due.
Experts recommend keeping EOBs for three to eight years. Insurance companies often send EOBs through the mail, but you can also download them directly from most insurance websites.
It may be easier to keep digital copies than paper ones. If you hold physical files, staple them together with any associated medical bills.
Is It Okay to Throw Away Medical Bills?
When it’s time to discard your medical bills, EOBs, and receipts, don’t just throw them in the trash. These documents contain sensitive data and should be shredded rather than merely crumpled up and thrown away.
Invest in a small shredder or search for free shredding services in your area. Some UPS and Staples stores offer free shredding any time of year. Other stores offer these services on specific dates.
Please don’t rely on doctors, hospitals, or insurance companies to maintain your records or health information. The only person who can optimally obtain, store, and share this vital data is you.
This topic is very near and dear to my heart. Please consider taking the time to gather your medical records. It could save your life.
16 thoughts on “Keeping Your Medical Records Could Save Your Life”
Very interesting post. I’ve noticed that my doctors are now asking patients to set up a portal where they can read test results. Do you think this is a good idea, and should patients print them off to keep?
By the way, I’m setting up an expense tracking notebook today- using your method. I’ll let you know how it goes.
Patient portals are great, but they don’t help with the transfer of information to doctors outside of a given network. For example, if I go to John’s Hopkins and then travel to my local hospital I still experience problems transferring the information from one facility to another. I think everyone should create a medical log, If you don’t have many health issues you won’t have much to write down and still store off important papers that can be physically shared between docs.
I’m excited to hear about your notebook tracking method! I hope it helps.
This is very good advice. I have a different doctor now than ten years ago and a different one than one I was child. It’s good to keep track of sicknesses and injuries so other doctors can see past treatments.
Thank you for your comment. Very few of us will keep the same set of doctors throughout our lifetimes. It’s really helpful to be able to pass a crib sheet on to future medical professionals. Especially as we age and may be prone to more ailments. I wish you the best of health, so you gather your documents, but never need them.
Thank you for sharing your experience. Like you, I assumed medical records are easily transferred between doctors. But, considering the size and intricacies of our healthcare system, it does make so much sense to keep records of our medical history. Such a great, informative post– I’ll definitely be more vigilant going forward.
Thank you for leaving a comment. I’m glad you found this post helpful and that you plan to keep a copy of your medical records from now on. I do hope you never have a major medical crisis like I did, but it’s so good to be prepared if you need the paperwork.
As a Director of a Medical Records department, this embarresses me, and as a patient who frequents physician offices, this infuriates me. Even after many regulations on EMR’s, there is still limited connectivity between practitioners. We have tried with portals and apps but there is still so many that do not participate or data that does not transfer easily. There are processes in place to autofax or notify a provider when results are available but that is only as good as the user. If the office staff does not have a good follow up in place, it will never get to the doctor. I have kept my own records for years now because I have been victim of waiting for results to be faxed over as I am sitting there freezing in a flimsy gown. Thank you for sharing. I will be sharing with my colleagues in the hopes that changes occur.
Oh Jennifer I never expected a Director of Medical Records to read this post, but I am glad you did. I know it sounds strange, but I would be ever so grateful if you would pass this information on to those who might be able to help fix our broken systems. It’s sounds like a lot of progress has been made and attempted, but also that we have a long way to go before we can trust the medical system to promptly share our documents.
I was twenty-seven years old when my medical problems began and at forty-three I can still pick up all of my documents. I cannot imagine older patients or those with severe disabilities who cannot easily drive back and forth to pick up their paperwork.
While we all need to be responsible for obtaining this information ourselves, it would be great if software engineers and medical professionals could continue to strive for better solutions. I know that when the right minds get together a solution will be found!
I am not a clinical provider of any kind, only a medical service user. It seems to me that part of the problem is that we do not ACTUALLY HAVE A SYSTEM. We have a bunch of individual offices, hospitals, testing facilities, etc. Some of them do indeed operate within a system, but we don’t have a system at the national or even the state level. And, man, there are REALLY INCOMPETENT people everywhere who show remarkable ability to not really care about your information. (Thinking right now of the life insurance folks who didn’t understand why I was going batsh*t when they… misplaced all my forms, with all kinds of health info plus my SSN. I did fax them over again — but at that point moreso because I figured attempting to send them to ANOTHER life insurance vendor would just add even more risk of loss.) I feel like we only realize how bad things are when we actually get sick (or a family member does).
Separate systems and solutions do appear to be the problem. All of my doctors within a certain hospital can share my information, but as soon as they need information from my general practitioner or a medical professional in a different facility everything is lost. When you have complex problems you need the help of many doctors often in different locations. Without a way to share this information we need to retain and distribute it ourselves. If I hadn’t experienced my own medical traumas I would have no idea this was the case.
I wholeheartedly agree with the points you made and some of the steps you can take to make sure information doesn’t get lost in the wash.
It would be nice if there was some centralized system that can communicate between any facility in the US but there are so many hurdles to overcome (patient privacy acts/HIPAA etc). Sometimes reading mammograms action is delayed because we are waiting for a facility to send images burned on CD via snail mail (and sometimes they never end up being sent (we have about a 30 day waiting policy before the report becomes finalized with or without use of priors).
I personally try to keep all my medical expenses for my family long term. I have an HSA account and decades from now I can pull money penalty/tax free by providing proof of these expenses being paid out of pocket. That basically makes my HSA a stealth retirement account that is triple tax advantaged (no tax going in, no tax on growth, no tax coming out).
Thanks for your input. I cannot believe that the medical system still waits for snail mail. It’s sad to think that a report could get finalized before you can compare it to previous images, which may have been lost on their way to you.
We continue to fund our HSA the same way that you do. I feel like the government will eventually shut down the loop hole of allowing withdrawals thirty years into the future for expenses incurred today, but even if that hole gets closed it’s still a good way to protect money for the future.
Great article! I carry a small notebook with me when I have a medical appointment where I write down my questions so I don’t forget to ask, and then write the answers. I also add a note in my iPhone calendar about any test results or procedures discussed. I also get copies of every test I have done. Don’t rely on what is on a patients portal. It is not the complete physician chart notes. It would be so much easier to record your meeting with doctor, but most won’t allow it! Also, many times medical claims are denied because the code for the test or X-ray or lab was coded incorrectly. I had biopsies of polyps denied because it was coded as routine! I called the insurance company (Medicare) who told me why it was denied, and then I called the hospital billing department and explained it was coded incorrectly. They resubmitted claim and it was paid. I also would never take any medication without discussing side effects with the doctor and then going home and doing my own research! You definitely have to be your own advocate. And, I couldn’t agree with you more to NEVER assume no news is good news.
Thank you for your comment. I’m so glad that you keep track of your medical records and make a point to check your bills as well. Your point about checking medications is spot on too. I experienced drug induced neuropathy years ago. Despite telling all doctors about it they have prescribed me similar medications that can produce the same side effects. I started one once and immediately felt tingly. Now I know not to take anything unless I research it myself. If I’m scared I call the doctor back and ask for a different medication. One doctor told me I had no other choice, so I saw a different doctor a week later. They said, “that’s just not right. There are plenty of other medications that can help you.” They prescribed a new medication that had no side effects and resolved my issues. Great job advocating for yourself! I hope that others will read your comment and follow your lead.
Considering the nature of medical records, is there a software or cloud-based solution people can buy into in which to copies of their records? Something secure and easily accessed? Does anyone already do this and like a software? I recently had a medical scare and thankfully I am in the same healthcare system I have been in for years, but I could see if this scare occurred in another state that valuable information might not be available. Great topic.
I’ve never looked into this before, so I can’t provide any information on it. I simply keep a copy of all documents on my computer and then print out a paper version too. I’ve found most doctors want a paper copy to look at during my visits and honestly if I send documentation over before my appointment it never gets read. At least one of my doctors scanned the documents I provided into my digital record at their office. I know because he brought those documents up for review at a later appointment. I also keep a digital copy of some important reports in my email under ‘medical documents’ so I can easily pull them up or email them if a doctor needs to see them. But of course a medical system of record would make this all easier.