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Maintaining Your Medical Records

In most parts of the world, patients have full access to their medical records and are able to see what doctors and medical staff are including in their records. In the United States this is addressed in the Patients Bill of Rights, which has been developed by the American Hospital Association. In order to obtain a copy of their medical records, a patient must cooperate with the medical records department, who may charge a set fee for making copies of this information.

Organizing the large volume of information that you are given within your medical records may seem difficult. However, having a logical and structured organizational approach is not as difficult as it seems. Taking the time to create a binder or file folder that includes specific information within each section can make it easier to navigate through the information.

The American Cancer Society has provided a template for a record-keeping book/binder that can be taken to each doctor’s visit in order to provide information quickly.2 This book/binder will help you recall all treatment dates, medications used and even the side effects experienced on a daily basis. The major sections of the book/binder may vary based on the individual patient. The book/binder can be separated by using dividers or an expanding portfolio with pockets that are labeled with different colors.

Personal Information

This section will list all the relevant personal information about the patient. At the minimum it should include:

  • Identification information such as birthdate, address, phone numbers
  • Contact information in case of an emergency
  • School information for any children
  • Spouse’s contact information including work and cell phone numbers

Medical Team Information

This section contains all contact information for the medical professionals that are involved in the patient’s treatment. This may include physicians, therapists and possibly nurses that are not directly involved in the treatment of breast cancer but are working with the patient in some other capacity. Dates of each visit for all medical professionals should be included in this section, as well as in the treatment journal.

Insurance Information

Contact information for insurance companies, agents or representatives need to be easily accessible in case there are questions about coverage for certain procedures or treatments. This may be available in an insurance policy handbook or on your insurance card.

This section should also have a copy of all bills, correspondence and details of any phone conversation made with the insurance company. When taking notes on the phone calls, be sure to include the date, time and person’s name with whom you spoke along with a summary of the conversation.

Treatment Journal

This section should contain a running timeline or journal of all the experiences that the patient has, both positive and negative. This will include information about doctor’s visits, dates of surgeries, names and dates of medications used as well as side effects or adverse reactions associated with them.

Reports and Tests

Copies of all medical reports including mammograms, blood tests, pathologist reports, etc. should be in this section. This is an essential part of communication between the different doctors in your medical treatment team. Doctor’s offices sometimes use different record-keeping systems and this incompatibility may delay the exchange of records between medical professionals.

Community Resources

Information on what services are available within your own community can be kept in this section. This will be a valuable asset when you are planning your return home after surgery or if you need assistance with medical bills, discount services for medical care or specialized outreach programs within the community.

Questions And Concerns

Having a centralized place to jot down questions or concerns as they cross your mind is a great way to get answers to everything you needed to ask at your next doctor’s appointment.

Follow-Up and Potential Options

This is where you will keep a record of all follow-up appointments for each doctor as well as information for relevant clinical trials.

In order to stay involved in making your own medical decisions, you should have an effective way to keep track of all your medical information. Research shows that 66% of women want to have some input in choosing their breast cancer treatment.3 Keeping an organized copy of one’s medical records will help a patient understand the full scope of their cancer and all treatment decisions being made.

References

1 Lobb, E. A., Butow, P. N., Barratt, A., et al. (2004). Communication and information-giving in high-risk breast cancer consultations: influence on patient outcomes. British Journal Of Cancer , 321-327.

2 American Cancer Society. (2004). A Breast Cancer Journey: Your Personal Guidebook, 2nd Edition. Atlanta: American Cancer Society.

3 Degner, L. F., Kristjanson, L. J., Bowman, D., et al. (1997). Information Needs and Decisional Preferences in Women With Breast Cancer. Journal of the American Medical Association , 1485-1492.

This article was originally published on July 27,2012 and last revision and update of it was 9/2/2015.