Leaving A Legacy To Science: Benefits Of Donating Your Medical Data

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.

Ciitizen is one of those tools.

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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.

“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.

Ciitizen doesn’t share users’ data without their consent. Before you use Ciitizen or other online tools to manage your health records, read the company’s privacy policy and other terms and conditions.

What steps can you take to collect your own medical records?

If you prefer to compile your medical records on your own, follow these steps to get started:

1. 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.
2. 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.
3. 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.


What types of medical records should you assemble?

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.

The takeaway

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.

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