After receiving a cancer diagnosis, you’ll likely need to see multiple healthcare providers. This includes surgeons, medical oncologists, and other specialists.
Every healthcare provider that you visit keeps a record of the care you’ve received from them. For example, your medical records include test results, treatment reports, and notes written by members of your cancer care team.
To get a full picture of your medical history, you need to bring together the medical records from the different healthcare providers that you’ve seen.
To help experts learn more about the cancer you’ve developed, you may decide to share information from your records with cancer researchers.
Take a moment to learn how you can compile and share your medical records with scientists, healthcare providers, and others.
When you have control over your medical records, it empowers you to share information from your records with other people — including scientists who are studying cancer.
When Stacey Tinianov was diagnosed with breast cancer in 2013, she was surprised that many of the questions she had about her condition and treatment options lacked clear answers.
“It was fascinating to me to hear things like, ‘Well, Stacey, we don’t know the answer to that because we don’t have enough data,’” Tinianov, an advocacy and engagement advisor at the consumer health technology company Ciitizen, told Healthline.
“In the U.S., we have more than 1.7 million people diagnosed with cancer every year, and we have almost 17 million survivors, so it’s fascinating for me to hear, ‘We don’t have enough data,’” she continued.
Data on those cancer patients and survivors does exist, but much of it is locked into the individual health systems where people receive care.
Gaining control over your own medical data allows you to share that information with organizations and individuals who are studying cancer.
This real-world evidence may help researchers unlock the answers to important questions about cancer and cancer treatments.
Assembling all of your medical records allows you to access, review, and share information about your health history at your convenience.
Even if you’re not interested in sharing your health data with researchers, this can be beneficial for you.
For example, it allows you to:
- Keep a permanent record of your health history. Healthcare providers don’t keep medical records forever. Maintaining your own copy allows you to review information many years later, even after providers have gotten rid of the original records.
- Learn more about your condition. You may receive a lot of information during medical appointments. When you have a copy of your records at hand, you can review that information at your own pace.
- Share information about your medical history with caregivers. If a family member or other person is helping to coordinate your care, you may decide to share your medical records with them. Reviewing your records can help them learn more about your health history and needs.
- Share information about your medical history with treatment providers. You may visit a variety of specialists, including healthcare providers that you see for a second or third opinion. The more your healthcare providers know about your health history, the better equipped they’ll be to provide care.
- Avoid unnecessary medical tests. If you’ve already received a diagnostic test, the results should appear in your medical records. If new healthcare providers can access your past test results, it may reduce your need for repeat tests.
- Learn if you’re eligible for clinical trials. If you’re interested in enrolling in a clinical trial to receive an experimental treatment, you’ll have to meet the study’s inclusion criteria. Reviewing your records may help you learn if you qualify.
- Manage health insurance claims and other legal issues. You may need to pull information from your medical records to file an insurance claim, apply for a tax deduction, or manage other legal matters.
You can request your medical records from different healthcare providers as you need them. However, that might lead to delays when you’re in a hurry.
Assembling a full copy of your medical records allows you to access and share your health information when you need to.
“Right now, it can be very challenging to get one health system to share with another,” Tinianov said.
“If we have control over our own health data, then we get to share with whomever we want to share, whether that’s a second opinion doc or whether that’s a researcher,” she added.
Several online tools and apps are available to help you gather, organize, and share your medical records. For people with cancer and survivors who live in the United States, Ciitizen is one of those tools.
Ciitizen is a free online platform that helps people who’ve received a cancer diagnosis collect and manage their medical records from multiple healthcare providers.
It helps take some of the work out of the medical record request process, while giving users access to records they may not be able to get from their healthcare providers’ patient portals.
“When you log on to Ciitizen, you create your own account and you identify the facilities where you’ve received care and where you would like to request your data from,” Tinianov explained.
“Then the system actually generates the [medical records] request for you,” she continued.
Once Ciitizen receives a user’s medical records, the user can review, download, save, and print those records from their online profile.
Users may also choose to share their records with caregivers or healthcare providers. Through its partnership with advocacy organizations such as Breastcancer.org, Ciitizen also allows users to share data with cancer researchers.
“If you say, ‘You know what, I want to share my data with researchers and specifically with research projects that I’m interested in,’ there are opportunities within Ciitizen for you to do that as well,” Tinianov said.
If you prefer to compile your medical records on your own, follow these steps to get started:
- Make a list of the healthcare providers and facilities that you’ve visited for diagnostic tests, treatments, or other services. If you have trouble remembering which providers or facilities you’ve visited, consider contacting your current and past health insurance providers. Request a copy of your insurance claims documents, which provide information about the healthcare services you’ve accessed.
- Visit each healthcare provider or facility’s website to check for an online patient portal. Some providers operate secure websites that allow patients to view and download parts of their medical records. You may not be able to access your full medical records through the patient portal, but it can provide a useful starting point.
- Contact each healthcare provider or facility to request your remaining records. They may ask you to fill out and submit a medical record release form by email, mail, fax, or other means. Some facilities may charge a fee for paper copies of your records.
After you’ve compiled your past medical records, keep them up to date by asking your healthcare providers to share a copy of anything they add to your medical records.
Whether you decide to use an online tool or compile your medical records on your own, it may be useful to collect the following records:
- information about your medical diagnoses, including the date you received your cancer diagnosis and the type and stage of the cancer
- pathology reports and diagnostic test results, such as biopsy reports, blood test reports, and images from CT scans or other imaging tests
- operative and post-operative discharge reports, if you’ve undergone any surgical procedures
- medical device identification cards for any implants you’ve received, such as breast implants after mastectomy
- details about other treatments you’ve received, including the types, doses, and start and end dates of radiation, chemotherapy, or other cancer therapies
- notes on the results and side effects of treatments you’ve received, including any allergic reactions
- contact information for all of your healthcare providers and treatment facilities
You may prefer to keep paper copies of your records, which you can carry to medical appointments. You may also maintain digital copies of your records.
Assembling a copy of your medical records from multiple healthcare providers can take some effort, but it may be worth it.
When you have a copy of your records, you can review your health information at your own convenience. It also empowers you to share health data with caregivers, healthcare providers, or cancer researchers.
Using online tools such as Ciitizen can help streamline the process and reduce the work required to request, compile, and share records.
If you prefer, you can also contact your healthcare providers directly to collect your own records.