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Managing Your Medical Records

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Each doctor and medical facility you visit keeps a medical record for you that includes information on your diagnoses, test results, treatment plans, medications, and more. While some information may overlap, each record contains only a small piece of the total picture of your medical history.

Because your medical information is spread out among various doctors, it’s a good idea to assemble your own copy of all your records that you can access whenever you need to. Here are just a few reasons why doctors — and people who have had breast cancer — say it’s helpful to have your own complete set of records in one place:

  • It will allow you to share accurate information about your health history with your treatment team.
  • It will save you time and stress when you need to get a second opinion or start going to a new doctor.
  • It will make it easier to find out if you are eligible for clinical trials.
  • You will be able to see if any of your records are inaccurate or incomplete and to request corrections.
  • You can potentially learn more about your diagnosis and condition than you would otherwise by reading parts of your records such as your doctor’s notes.
  • You can avoid having to unnecessarily repeat medical tests because a healthcare provider couldn’t get access to your previous test results.
  • You can more easily resolve questions that come up about your medical bills and health insurance claims.
  • You can share your records with your loved ones, empowering them to help with your care.
  • You won’t have to worry about losing your records if a medical practice or facility closes, your doctor retires, or some of your older records were destroyed because a facility was not legally required to save them for more than 10 years.

Collecting all your medical information requires some patience and persistence since you may have to contact multiple facilities (who each have a different process for requesting records), register for multiple patient portals, and collect files that are in different formats.

Not sure where to begin? On this page, you can learn about what types of information you should collect, your legal rights to access your health information, and ways to make gathering and storing your records easier.

How can I get my medical records?

You will probably have to gather records from a few different health institutions or healthcare providers to have a complete record of your breast cancer treatment. Each facility will have the records related to the care you received there, but in most cases, they won’t have the records of care you received elsewhere. Here’s how to get started:

  1. Make a list of the doctors and institutions you want to gather records from. If you’re having trouble remembering which doctors you saw or where you received care in the past, consider contacting the health insurance companies you’ve used. Your insurers should have information on claims related to your care for the periods you were covered. You can request (or download from a member portal) “explanation of benefits” documents or other claims documents that will show the names of your doctors, the tests and treatments you received, the dates of the tests and treatments, and more.
  2. See what you can find using online patient portals. A patient portal is a secure website offered by a hospital, health system, clinic, individual medical practice, pharmacy, or lab that allows you to view and download parts of your health records. You can find out which of your providers have portals and register for an account for each portal if you haven’t done so already. Portals generally don’t contain your complete records from each facility, but you can use them to find things like your lab test results, imaging reports, medications, and discharge summaries. Some portals allow you to access records from other places where you received care. Also, some portals offer features for sharing your records with your other providers or your caregivers.
  3. Request the rest of your records by contacting your providers directly. Many health institutions have instructions on their websites for how to request your medical records from that facility. If you can’t find this information online, call the provider or ask at your next visit. Usually you can request your records by filling out, signing, and submitting (via an online form or by mail, fax, or email) a medical record release form. Some facilities charge a fee for copies of records, and it’s your right to find out what this fee will be in advance. (For more about your rights, see “What legal rights do I have to my medical records?”.) Keep in mind that it may not be possible to get copies of older medical records. State laws vary, but in most cases healthcare providers are not required to keep the medical records of adult patients for more than 10 years.
  4. Look into tools that can help gather your records. Some websites and apps can help collect your medical records from multiple healthcare providers and institutions. See “Which digital tools can help me manage my medical records?”.
  5. Always get your own copies of imaging. Any time you have an imaging test (such as a mammogram, ultrasound, MRI, PET scan, CAT scan, or X-ray), ask the technician or nurse right away for the films or a digital copy on a CD or flash drive. Usually they’ll either give you the images or tell you to get them from a centralized medical records office at the facility. It’s worth getting the images as soon as possible so you’ll always have them on hand. Imaging usually isn’t available through patient portals, and typically doctors don’t have a quick way to access imaging that was done at other health institutions or that is more than a few years old. The patient is often responsible for providing copies of imaging.
  6. Keep your records up-to-date. Once you’ve collected your records from the past, get into the habit of saving the new records that are generated whenever you have a test, procedure, or prescription. You can save new records as they appear in your patient portals and ask for a copy of your most recent records when you have an appointment with a provider.

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What legal rights do I have to my medical records?

The U.S. Health Insurance Portability and Accountability Act (HIPAA) is a federal law that gives U.S. residents rights over their health information. Often patients and healthcare providers aren’t aware of all these rights. When gathering your health records, keep in mind that you have the right to:

  • ask healthcare providers, health plans, labs, and pharmacies to show you your health records or health information and to provide a copy.
  • receive your health records within 30 days of requesting them. (The healthcare provider may take up to 60 days, but they must let you know in writing the reasons for the delay and the date by which you will receive your records.)
  • receive your health records for a reasonable fee and to find out the fee in advance.
  • receive your health records in the format that you request, if the healthcare provider can readily produce the records in that format. (If not, they must provide you with your records in another format that you agree on together or as a readable hard copy).
  • request that corrections are made to your health records to make them more accurate or complete.

If you think a healthcare provider has in some way violated your rights to your records under HIPAA, bring up your concerns with them. You can print out information about your specific rights under HIPAA from the U.S. Department of Health and Human Services website to share with them to make your case. If that doesn’t help, you can file a complaint with the Office for Civil Rights at the Department of Health and Human Services in Washington, D.C. But remember that (as mentioned above) healthcare providers are not necessarily required to keep your older records. State laws vary, but in most cases providers do not have to keep the medical records of adult patients for more than 10 years. HIPAA does not address how long providers must keep records.

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Which types of health information and records should I collect?

Depending on your individual diagnosis and treatment plan, it can be useful to keep copies of the following records:

Imaging records

Each time you have a mammogram, ultrasound, MRI, PET scan, CAT scan, or X-ray of your breast area, keep:

  • the images on film, a CD, or flash drive (it’s important to have your own copies, because they’re usually not saved in patient portals and healthcare providers often don’t have an easy way of accessing imaging that was done at other facilities or that was done more than a few years ago)
  • the name, address, and phone number of the institution where the image was made
  • copies of all imaging reports

Pathology records

Each time you have a biopsy or a surgery in which cells or tissues are removed and sent to a pathology lab for examination, keep copies of:

  • all pathology reports (these reports should include your name, the date of the procedure to remove the sample, and the type of sample removed)
  • copies of any second opinions

Surgery records

Keep a record of each surgery you’ve had that includes:

  • date of surgery
  • name, address, and phone number of institution where you had surgery
  • surgeon's name and phone number
  • copy of discharge summary after surgery
  • copy of operative report
  • copies of any second opinions
  • device identification card(s) for breast implants (if you had breast reconstruction with implants)

Radiation records

Because you may receive more than one round of radiation therapy, it's easiest if you keep a separate record for each round of radiation that includes:

  • name, address, and phone number of institution where radiation was given
  • name and phone number of doctor who supervised your radiation therapy
  • dates radiation therapy was given
  • type of machine or technology used (linear accelerator, brachytherapy, etc.)
  • area treated (include areas shielded)
  • amount of radiation per session
  • total dose of radiation
  • copies of all radiation reports and radiation treatment summaries

Chemotherapy records

Because you may receive more than one round of chemotherapy, it's easiest if you keep a separate record for each round of chemo that includes:

  • name, address, and phone number of institution where chemotherapy was given
  • dates of chemotherapy
  • name and phone number of doctor who supervised your chemotherapy
  • how medicine was given (as a pill, IV through a peripheral vein, IV through a central line, lumbar injection, etc.)
  • type of central line, if applicable
  • name of treatment protocol or clinical trial
  • name of medication(s)
  • dose (per session, number of doses, cumulative dose if applicable)
  • anti-nausea medicines used
  • allergic reactions, if any
  • any testing or monitoring that was done to check for adverse reactions, such as echocardiograms and blood tests
  • adverse reactions, if any (and any change in dose or medicine because of adverse reactions)

Targeted therapy and immunotherapy records

Keep a record of each type of targeted therapy or immunotherapy you receive that includes:

  • name, address, and phone number of institution where targeted therapy or immunotherapy was given
  • dates you received the targeted therapy or immunotherapy
  • how medicine was given (as a pill, IV through a peripheral vein, IV through a central line, or an injection)
  • name of medication
  • dose received each session
  • number of doses
  • name and phone number of doctor who supervised your targeted or immunotherapy therapy
  • anti-nausea medicines used
  • allergic reactions, if any
  • any testing or monitoring that was done to check for adverse reactions, such as echocardiograms and blood tests
  • adverse reactions, if any (and any change in dose or medicine because of adverse reactions)

Other medications

For any other medications you take to treat breast cancer (such as tamoxifen or Arimidex) or to ease treatment side effects, keep a record of:

  • name (both brand name and chemical name)
  • what the medication is for
  • date prescribed and how long you took the medication
  • dose
  • name, address, and phone number of doctor who prescribed the medicine
  • directions for taking
  • any side effects you experienced and what was done to manage the side effect(s)

Genetic testing records

Each time you have a genetic test, keep:

  • the name, address, and phone number of the genetic counselor, geneticist, or doctor who ordered the genetic test or helped interpret it
  • the lab report for the test, with the contact info for the lab
  • summary letter (if this was provided to you, it would typically be from the genetic counselor or geneticist you met with and would include info on your medical and family history, an interpretation of your genetic test results, a risk assessment, and management recommendations)
  • notes you took when you met with a genetic counselor
  • if you have them, also save: a family tree that shows all of the cases of breast, ovarian, and other types of cancer in your family, along with the ages at which they occurred and any other documents that your genetic counselor said are relevant to evaluating genetic risk (for example, family members’ genetic test results, family members’ pathology reports, or a death certificate of a relative who died young)

General medical information

It’s handy to have the following information saved or printed somewhere that you can easily access, especially when you’re filling out medical history forms for healthcare providers:

  • current legal name and any other names you may have used in the past
  • addresses where you have lived over the last 10 years
  • birthday
  • blood type
  • height and weight
  • list of vitamins/supplements you take, including dosages
  • people to contact in case of an emergency, including home, work, and mobile phone numbers; home and work addresses; and email addresses
  • allergies (including foods, animals, and medicines)
  • glasses or contacts wearer, if applicable
  • health insurance information, including member ID number, group number, and name, birth date, and social security number of primary person insured if it isn't you
  • current list of immunizations and dates given
  • routine test results (cholesterol, blood pressure, blood sugar)
  • primary care doctor's name, address, and phone number
  • hereditary conditions in your family history
  • list and dates of significant illnesses and treatments besides breast cancer (include childhood diseases such as chicken pox, mumps, etc.)
  • current medicines taken and dosages
  • eye and dental exam records
  • living will, advance directives, or medical power of attorney, if applicable
  • organ donor authorization, if applicable

Other records that are in some cases worth saving include those related to physical and occupational therapy, mental health treatment, and complementary medicine treatments.

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How can I organize and store my medical records?

Even if you have access to your medical records through patient portals or are using other websites or apps to help collect and organize your health information, it makes sense to keep your own separate set of copies printed up or saved on your own computer or flash drive. That way, you’ll always have them even if they stop being available through a particular website or app and you’ll have them all in one place.

Develop a system for storing your records and keeping them updated that works for you.

Many people still like keeping paper copies of their medical records and CDs of their imaging in file folders or three-ring binders. One advantage of having hard copies of your records is that they’re relatively easy to bring to your medical appointments. You can quickly flip through your paperwork to find a particular piece of information for your doctor during an appointment. And you can scan paperwork to create digital copies whenever you need to.

If you’ve collected digital versions of all or most of your records, you have a few options for storing them:

  • Save the files on your home computer.
  • Save the files on a flash drive or external hard drive. These drives are easily portable and you can in theory bring them to medical appointments, but don’t assume that you’ll be able to transfer files to a healthcare provider using your own drive. Always ask a provider how they can receive files in advance.
  • Store the files on a secure cloud storage service. This will allow you to access your files online from anywhere, using a computer, smartphone, or tablet.

Wherever you choose to store your digital files, do what you can to keep them as secure as possible — for instance, develop a system for backing up the files and change the settings on your computer so that you have to enter in a password every time you start the computer or wake it from standby mode.

And since it can be hard to keep track of all your usernames and passwords for the various patient portals and other sites that you visit to collect your health information, consider using a password management app or program.

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Which digital tools can help me manage my medical records?

In addition to patient portals, there are a number of other websites and apps that can help you gather your medical records from multiple sources and keep them updated over time. Here are some examples:

  • Apple Health app’s “Health Records” feature
    If you have an iPhone or iPod touch and live in the U.S., you can use the Apple Health app (which comes preinstalled with the device) to organize and access certain health information for free. The “Health Records” feature within the app allows you to access records from more than 400 participating health institutions. You can search within the app to see if your healthcare providers are participating, and you can potentially access records from multiple providers. While you can’t view your complete medical records from each institution through the app, you can view some specific categories of data such as lab results, medications, procedures, and clinical vitals. Each time those are updated (for example, when you have a new lab test result) you’ll receive a notification. It’s not possible to download your records from the app, but you can view them on your iPhone or iPod touch any time.
  • Ciitizen
    Ciitizen is a free service that allows you to collect and organize your medical records from all your healthcare providers in one online profile. Ciitizen requests your entire record set from each provider, which may include some things that you typically can’t get from patient portals such as surgical notes and imaging. You can also upload any medical records or imaging you’ve collected yourself to your profile. You can choose to share your records in Ciitizen with your doctors, caregivers, or with cancer researchers. And when you want to print up or save copies of your records on your home computer, you can download them from your Ciitizen account. Currently, Ciitizen is only available to people who have a diagnosis or a history of cancer and who live in the U.S. Ciitizen is a partner of Breastcancer.org. To learn more, visit Ciitizen.

Other apps and websites for managing your health information include WebMD Health Manager, CarePassport, MyChart, healow, and FollowMyHealth, among many others.

A note about privacy: It’s important to know that the personal health information that is stored in or sent from the websites or apps of healthcare providers and health insurance companies is protected under HIPAA’s privacy and security rules. However, the personal health information that you upload to other websites and apps (such as the ones mentioned above) is not protected under HIPAA. In some cases, it could potentially be shared or sold without your permission. Data rights experts are concerned that this could lead to instances in which you could, for example, be denied coverage by providers of disability, life, or long-term care insurance or face job discrimination based on your health history.

Before you decide to use a website or app to access and store your health information, read the terms and conditions and the privacy policy. Make sure that the policy says that your personal health information will never be used, sold, or shared without your permission. Privacy policies and terms and conditions can change at any time, so check back periodically for updates.

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This page was developed with contributions from the following experts:

Robin M. Ciocca, D.O., breast surgical oncologist at Main Line Health in Wynnewood, PA

Julie Pursley Dooling, MSHI, RHIA, CHDA, FAHIMA, director of Health Information Management Practice Excellence at the American Health Information Management Association in Chicago, IL

Andrea Downing, data rights advocate for people with hereditary cancers and other health conditions, co-founder of The Light Collective

Sameer Gupta, M.D., MPH, medical oncologist at Bryn Mawr Hospital in Bryn Mawr, PA

Deven McGraw, J.D., MPH, chief regulatory officer for Ciitizen in Palo Alto, CA

Cristina Nixon, MS, LCGC, licensed certified genetic counselor with the Genetics and Risk Assessment Program at Main Line Health in Wynnewood, PA

Robert S. Rudin, Ph.D., senior information scientist at RAND Corporation in Boston, MA

Brian Wojciechowski, M.D., medical oncologist at Riddle, Taylor, and Crozer hospitals in Delaware County, PA and medical adviser to Breastcancer.org


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