Managing Medical Records When You Have Cancer | Northwestern Medicine (2024)

Create a centralized system

Start by setting up a central spot for keeping all your records organized. After all, you may need to gather reports and documents from several locations. This central spot could be something like a binder, a digital folder on your computer, or even an app. Make sure the system you use is private and secure.

Whatever system you choose, use it to store these key documents:

• Diagnosis and pathology reports

• Treatment plans and summaries

• Lists of medications and prescriptions

• Lab results and imaging study reports

• Summaries and notes from appointments

• Contact information for your healthcare providers

When you complete treatment, your healthcare team may give you a survivorship plan. This summarizes the cancer treatment you had and outlines any future follow-up care that you need.

Keep your records current

As you go through your cancer journey, you will keep adding new information and records. Get into the habit of updating your centralized system often. Make sure it has the latest documents and notes from appointments. Always keep your medicine list updated, as it may change often. Bring it to all of your medical appointments. Keep a current copy with you in case of unexpected hospitalizations or emergency room visits.

By staying on top of things, you’ll have a complete picture of your medical history. That will make it a lot easier to talk about your treatment and progress with your healthcare team.

Learn about privacy laws

When you’re working with medical records, it helps to learn more about privacy laws. At the top of the list is the Health Insurance Portability and Accountability Act (HIPAA). HIPAA protects your health information and gives you the right to:

• Access your records

• Ask for corrections

• Control who else can access your information

Knowing your rights can help you feel more confident when requesting records. It also can bring peace of mind when discussing sensitive health information with your providers.

Communicate with your team

A big part of managing your medical records is keeping them accurate. And to do that, you need to stay in touch with your healthcare team. When you work with them, you can:

• Make sure everything’s current. Accurate records mean better decisions and care that’s right for you.

• Catch mistakes. Being open with each other makes it easier to spot and fix any errors.

• Feel empowered. Going over your records and asking questions helps you get what’s really going on with your health.

• Keep an eye on your progress. Regular check-ins make it easier to see how well your treatment is working. Then you can adjust the plan if needed. Or celebrate wins along the way.

Remember to keep your team informed about any changes in your treatment or health status. And don’t hesitate to ask for copies of your records. You may have other specialists caring for health issues in addition to your cancer care team. These can include providers such as a cardiologist or endocrinologist. An organized system will help you communicate changes in your treatment plan with your whole healthcare team.

Get support from others

Think about sharing your records with someone you trust. Managing medical records can be a lot to deal with. Especially when you’re already coping with the ups and downs of cancer. Consider sharing your records with a trusted friend or family member. They can help you stay organized and speak up for your needs. You can also complete a release form so they can access and obtain medical records for you.

Plus, it’s great to have someone in your corner who knows your medical history. It can give you some extra peace of mind and support during your cancer treatment.

Managing your medical records may seem daunting. But with the right organization, tools, and support, you can stay on top of the information every step of the way.