The Importance of Backing Up and Organizing Digital Medical Records

Richard E. Poulin III avatar

by Richard E. Poulin III |

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Our daughter, Rylae-Ann, has medical records scattered around because of multiple visits to the hospital, traveling to meet doctors, and moving homes. Those afflicted by aromatic l-amino acid decarboxylase (AADC) deficiency will benefit from keeping their medical records readily available and organized, as they deal with many doctors, labs, testing facilities, and pharmacies.

Receiving copies of medical records is your right in the U.S., according to the Health Insurance Portability and Accountability Act (HIPAA) of 1996. Doing so provides several benefits. You can see what the hospitals have on file for your child, and update any information that may be incorrect. You can also study or share the records. We’ve often needed to study the complex information at home to better understand what was discussed during consultations.

Traditionally, medical records are stored and maintained by your primary care provider. However, more people now maintain their own medical records, which is advantageous for those in our community who may need to travel for healthcare, seek second opinions, or review the information.

Online Medical Records | AADC News | A storage binder and folders containing copies of Rylae-Ann's medical information.

As Rylae-Ann’s parents receive copies of medical records from hospitals and clinics, they make scan copies and organize the essential documents into folders and online. (Courtesy of Richard E. Poulin III)

How to get a copy

The first step is to get copies. Hospital procedures may vary slightly, but you have the right to copies of medical records, including notes, medical test results, lab reports, and billing information.

Those eligible to request medical records are the patient, parents or guardians if the patient is under 18, and caregivers who have written permission. Usually, you must complete a form with a specific department in the hospital to grant others access to your medical records. Searching the hospital website or calling the reception desk can help expedite the process.

If your hospital offers it, get both paper and digital copies. If you only receive paper copies, you will need to scan them to upload them online. Unfortunately, there will most likely be a cost associated with getting copies of your medical records. To make your work efficient, you should back up only what is necessary and then store it organized.

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What to back up

You can keep your records in paper or digital form, whichever is easiest for you. You do not need to be tech-savvy to store documents online, but this method provides many more options, while also reducing the risk of lost documents. We had so many papers, notes, and reports that it was too troublesome to manage all the paper. To help minimize storage space, include only what is necessary.

Include documents that explain AADC and relevant tests that show a record of this condition in your child. Also, back up any diagnostic test results, pathology reports, genetic tests, or data captured by equipment such as electroencephalograms (EEGs). Medication names and prescriptions are also beneficial. All hospitalizations for treatment should also be included. Be sure the document states the dates, results, complications, and follow-up information. It is also necessary to retain copies of immunization records. This will ensure your child stays on track with the required shots and vaccines.

We also include records from other types of care, such as occupational, physical, and speech therapy. These are usually from organizations outside the hospital, so we have to submit a separate request. However, our doctors appreciate having this information as well. Finally, include contact information for doctors. This allows doctors to connect with one another to ask for further details or advice.

Organizing your backup

There are different ways to organize your medical information, and over time, we’ve developed a method that works for us. However, consider using a similar process to traditional methods, like using a filing cabinet, when saving information online. We first grouped information. You could do this by hospital, department, or type of record. Once you establish your grouping, then you can sort by date. To sort by date, include it in the file name.

For example, in my folder “[Hospital Name],” I have a subfolder called “Tests.” In the “Tests” subfolder, I would store my file called “hospital-name_eeg_2020-12-31.pdf.” Putting some information in the file name makes it easy to use the search tool to find the document.

As soon as you receive a report, upload it immediately, so you do not have to do too much at once. We started backing up our medical records about four months into our medical diagnosis journey. By then, we had several things we needed to scan. Initially, we stored everything into one long PDF file. We quickly saw that this would not be practical.

Storing your backup

There are several available apps that are specifically designed to store medical records. This may provide you with more options and stricter security protection. It is also worth asking staff at your hospital which app they prefer, as they can send you digital records directly through their approved app.

My wife and I use Google Drive and Microsoft OneDrive. The free versions offer more than enough storage space for what we need. Also, they are popular apps that most people are familiar with, including doctors. When sending and sharing files, we’ve never had trouble.

Online health records

With your child’s medical records online, you, family members, and caretakers have easy access to the most up-to-date medical information. It is stored and organized online so you can manage insurance claims, finances, and other incidentals. If you are required to travel, visit new doctors, or get second opinions, they can immediately access health records, saving time and providing the best possible care.

I appreciate having the records on hand, as it helps me better understand AADC and review what is discussed during appointments. Consider creating an online backup of your child’s medical records.


Note: AADC News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of AADC News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to aromatic l-amino acid decarboxylase deficiency.