Keeping Your Medical Records Organized

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A good way to handle a difficult and high-stress time is to stay organized and informed. It’s very common to not remember every small detail about your diagnosis, treatment plan, and medical history, but you can take some steps to combat that. Every detail may not be committed to your memory, but you can keep a record of those details. Keeping a personal copy of your medical records through this time can take some weight off your shoulders and make this demanding time just a little more bearable. 

What goes in my personal health record?

An ideal personal health record will be a snapshot of your medical background. It will be a resource for any physician to go through a progression of your previous treatment plans and learn what has and has not worked. It will help save time, often eliminating the need to duplicate tests when you have the results already in hand.

What types of records should I keep?

Some important information might be on your electronic health record if your medical provider uses this format of recordkeeping. You should also communicate with your doctor's office that you would like to receive a copy of each of your results. Don't be afraid to ask twice if they are not responsive. You have a right to your medical records! 

Here is some information that should be in your personal records:

  • Your current and original diagnosis (as things change)
  • Previous and current treatment plans and results
  • Complete medication list with dose and frequency, and make a note of any side effects you experience
  • Pathology reports of each of your biopsy and/or surgery samples
  • Imaging test results (CT scan, MRI, PET, etc.)
  • Detailed summaries from prior surgeries, hospital stays, drug treatments, therapy, etc., if applicable
  • Personal notes from appointments
  • Contact information for all of your physicians
  • Health insurance and legal forms (medical power of attorney, advance medical directive, financial power of attorney, medical insurance coverage, etc.)
  • Healthcare bills

Here are two pre-made Treatment and Survivorship Care Plan Templates developed by American Society of Clinical Oncology (ASCO). This can be either filled out by you or your physician with the most up-to-date information.

How to stay organized?

It’s important to have a system in place for the documents you’ll collect through the course of your diagnosis and treatment. Whether you choose to keep a paper or electronic record, efficient organization of the information will make finding your health information easier. Label and separate files for different types of forms so you know exactly where to look. 

This may be an area where you can recruit help from a loved one. Compiling a tabbed 3-ring binder notebook of your paperwork or a folder on your computer is a good way for your support system to help alleviate some stress off your shoulders.

When would my personal records be useful?

If you are meeting with a new physician, you would want him/her to be up-to-date with your diagnosis and treatment. By coming to your first meeting with all the necessary information they need, you can expedite the process. 

There might be emergency cases when your treating physician doesn’t have access to your electronic health record and needs a snapshot of your medical background. With the extensive amount of information in your background, an emergency list, as an overview of your personal health record, is extremely useful for the physician to understand your health.

When dealing with your medical insurance, it would be helpful to have a written record of the appointments and tests you are being charged for. 

And lastly, this record of your treatment is most useful for you, as the patient. If you can keep track of your diagnosis and treatment, then you can be well-informed and prepared for your next steps.

What goes in my emergency list? 

In the case you, or a medical professional, need to read a quick overview of your medical history, an emergency list of key information from your personal records will come in handy. This list should be a page of the most important information such as:

  • Detailed diagnosis and current treatment plan;
  • Current medications and allergies;
  • Health Insurance;
  • Contact information of your: Emergency contact and healthcare providers; and
  • Advance Medical Directive.

This page will be helpful in the case of an emergency and physicians need to know the vital information before treating you. Keep the information easily accessible in your wallet, on your refrigerator, or even on your phone. Be sure to keep it updated as things change.

Do I need personal copies of my health record if I have an EHR?

An electronic health record (EHR) is a system used by many medical professionals to share health information with patients via the internet. This is extremely convenient in terms of having a collection of your health records until you change your doctor or medical center. Not all medical providers use the same system, making the transfer of your health information very difficult.

In this case, downloading and keeping a personal copy of your records will greatly benefit you and your new provider. Rather than waiting for your old office to send your information and risking a long time between seeing a new doctor, it will be more efficient for you to have a copy of your records to present in any situation.

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