Your Medical Data Doesn’t Belong to You: Understanding Healthcare Information Rights

You might assume that since it’s your body and your health, the information in your medical records belongs to you. The reality is more complicated. While you have rights to access and review your medical information, the actual records typically belong to the healthcare provider or facility that created them. This distinction matters more than you might think, especially when you’re trying to coordinate care, get second opinions, or correct errors that could affect your treatment.

Understanding what you can and cannot control about your medical information is crucial for effective self-advocacy. When you know your rights and the system’s limitations, you can work more strategically to ensure your records are accurate, complete, and accessible when you need them most. This knowledge becomes your foundation for better communication with providers and more effective care coordination across your healthcare team.

Why this matters in real appointments

Misunderstanding your rights around medical records can create significant barriers to effective healthcare communication. Many patients don’t realize they can request copies of their records before appointments, leading to visits where they can’t provide complete information about their medical history. Others don’t know they can review visit notes through patient portals and request corrections, allowing inaccurate information to compound across multiple providers.

When you don’t understand the difference between accessing your information and controlling how it’s documented, you might miss opportunities to ensure accuracy during visits. Providers often rely on previous records when making treatment decisions, so errors or omissions in your documentation can perpetuate through your entire care team. Knowing how to review, understand, and respond to your medical records puts you in a much stronger position to advocate for accurate documentation and appropriate care.

Practical strategies you can use today

1. Request your records proactively, not reactively: Don’t wait until you need records for a referral or second opinion. Request copies of your visit notes, test results, and procedure reports regularly through your patient portal or medical records department. Having your own complete file helps you spot patterns and prepare for appointments more effectively.
   Try saying: “I’d like to request copies of all my visit notes and test results from the past year. What’s the process for getting these records, and how long does it typically take?”
2. Review visit notes within 30 days and request corrections: Most healthcare systems allow you to request amendments to your medical records if you find errors or omissions. Review your visit notes as soon as they’re available and submit correction requests in writing with specific details about what needs to be changed and why.
   Try saying: “I reviewed my visit notes from [date] and found an error. The notes state [incorrect information], but the accurate information is [correct details]. Can you walk me through the process for requesting a correction?”
3. Understand the difference between amendments and addendums: Healthcare providers cannot change original records, but they can add amendments or addendums that clarify or correct information. Know that your correction request may result in an additional note rather than changes to the original documentation, and both will become part of your permanent record.
   Try saying: “I understand you can’t change the original notes, but I need this correction to be part of my permanent record. Will this be added as an amendment that future providers will see?”
4. Know your rights to restrict information sharing: While you generally cannot control how providers document your care, you do have some rights to request restrictions on how your information is shared. You can ask providers not to share certain information with specific individuals or request that certain details not be included in insurance claims in limited circumstances.
   Try saying: “I want to understand my options for restricting how certain health information is shared. Can you explain what restrictions I can request and how to document those requests?”

Build your personal health record system

Since you can’t control the official medical records, create your own comprehensive health file that supplements what providers document. Keep copies of all test results, visit summaries, medication lists, and treatment timelines in a format you can easily access and share. Include your own notes about symptoms, side effects, and treatment responses that might not be captured in official documentation.

This personal system becomes especially valuable when coordinating care between multiple providers or seeking second opinions. You can provide complete information even when providers don’t communicate effectively with each other. Your personal records can also help you identify discrepancies in official documentation and provide evidence when requesting corrections or clarifications.

Make it stick this week

• Request copies of your last three visit notes through your patient portal or medical records department.
• Review these notes for accuracy and make a list of any errors or omissions you notice.
• Create a simple filing system (digital or physical) for organizing your personal copies of medical records.
• If you find errors in your records, submit a written request for correction using your provider’s official process.

Disclaimer: This article provides general information about communication and advocacy. It is not medical or legal advice. Consult a qualified professional for guidance on your specific situation.