Keeping Your Own Medical Records
What You Need, What You Don’t, and How to Organize It All
by Jody Pelusi, PhD, FNP, AOCNP
It’s always a good idea for you to keep your own complete, updated medical records so you can play an active, informed role in your care. This is especially true after a cancer diagnosis. Though this may seem an overwhelming task at first, what you need may be simpler than you think.
Keep your information in an “easy to transport” file, so it is readily accessible to help you or a loved one provide complete information to healthcare providers. Since you will likely have multiple healthcare providers over the course of treatment, you may be the only one with a complete and up-to-date set of records. The key items to include are as follows:
- Personal Information
This includes your name, birth date, birthplace, current address, phone number, and e-mail address.
- Living Will/Advanced Directives
- Medical/Durable Power of Attorney
This should contain the names and contact information of the person(s) to whom you have given the power of attorney, as well as a copy of the legal documents.
- List of Personal Contacts
These are individuals to whom you have given permission to receive information regarding your health status. You should also include their contact information and list their relationship to you.
You may be the only one with a complete and up-to-date set of records.
- Family Medical History
List immediate family members and any illnesses they have experienced, such as cancer, heart disease, diabetes, mental health issues, lung diseases, and other chronic conditions, as well as their age at diagnosis. This information will assist your healthcare provider in determining your risk for specific chronic diseases and types of screening tests you may need.
- Your Past Medical History
List any chronic illnesses you have had and your age at diagnosis; any surgeries you have had, the date the surgery was performed, and the name of the surgeon (include the name of the hospital or facility, as well as the city and state); and any exposures to toxic chemicals or radiation. If you are a woman, you will also need to include when you started, and stopped, your menstrual period, the number of pregnancies and births you’ve had, and any complications with pregnancies or deliveries.
- Preventative and Early Detection
Practices List your most recent screening tests (mammogram, Pap smear, colonoscopy, PSA, bone density scan, dental/vision examinations, etc.) and the vaccinations you have had, including when you were vaccinated.
List both the specific agent and type of reaction.
List any prescriptions, over-the-counter medications, and herbs or vitamins you are currently taking. Include names, doses, frequency, reason for taking them, date started, and the prescriber.
- Cancer History
Keep a copy of all pathology and operative reports. Obtain special laboratory reports, such as bone marrow biopsy reports and genetic and tumor testing. It is not necessary to keep every routine test done, so ask your oncologist to help you select the important ones.
As part of your cancer history, include imaging studies, such as PET or CT scans, echocardiograms, and bone scan reports. Treatment records also are essential to have. Usually, your oncology team will provide you with a treatment summary, which includes all relevant information, at the end of your adjuvant treatment. However, if you are having or have had multiple treatments, you may not receive a summary.
In this case, you should include any chemotherapy, biotherapy, or immunotherapy you have had. List the name, dose (actual dose as well as the formula for the dose, such as 50 mg/m2), and frequency of treatment. Again, your treatment team can provide this for you. Also, list any significant side effects you experienced during or after therapy. If you received radiation therapy, your radiotherapist will write a summary note that includes the type and amount of radiation therapy, dates and number of treatments, and any issues that arose. Ask for a copy of this note and keep it in your files. You will also want to list surgical procedures you underwent (biopsies, operations, catheter placement, reconstructions, etc.), with dates, location of the facility where the surgery was performed, and the name of your surgeon.
In addition, list any religious or cultural beliefs, traditions, and ceremonies that would be important to you during treatment or that would change how care would be provided to you. If providers are not aware of these, they cannot incorporate them into your plan of care.
There is no right or wrong way to keep your health records. You determine what works best for you. Work with your healthcare team to select what records you specifically need and how to obtain them.
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Dr. Jody Pelusi is an oncology nurse practitioner in a community-based practice in northern Arizona. She has been in oncology for over 36 years.
This article was originally published in Coping® with Cancer magazine, January/February 2010.