Mistakes in medical records are more common than we might think, and while some errors are harmless, others can have serious long-term consequences. A rushed diagnosis or an auto-populated note in an electronic health record (EHR) can follow a patient for years, affecting future care, insurance claims, and even legal matters. For families navigating complex or rare medical journeys, these errors can be devastating.
This blog explores the steps families and advocates can take to correct mistakes in medical records, weaving in real stories from patients and advocates who have experienced these challenges firsthand. We’ll also include how Primary Record helps you stay organized and in control at each step of the process, ensuring that accurate, well-documented information supports your correction requests.
Real-Life Examples of Medical Record Errors
Medical errors can occur for a variety of reasons. Often, healthcare providers make assumptions based on a patient’s appearance or the medications they are taking, leading to incorrect diagnoses or medical history entries. In other cases, EHR systems auto-populate information that may not be accurate or relevant, causing confusion in future care. This article was inspired by Beth Gore, CEO of The Oley Foundation, who posted about her son’s story during a recent emergency room visit.
Beth Gore’s Experience
Beth Gore, an advocate for families dealing with rare diseases, shared a troubling story about her son’s medical care. Her son, who has an ultra-rare form of Congenital Muscular Dystrophy, was misdiagnosed with cerebral palsy (CP) during an ER visit. The ER doctor likely hadn’t encountered her son’s condition before and defaulted to a common diagnosis based on his presentation.
While it might seem like a small error, Beth is all too familiar with how these mistakes can have long-term consequences. Years earlier, a doctor misrecorded that she had pre-diabetes, which resulted in her being denied health insurance. Beth warns that even seemingly insignificant errors, like the CP diagnosis, could create future problems for her son if they go uncorrected.
Alicia Scott’s Story
Alicia Scott also shared a similar challenge when her son, who has a unique form of epilepsy, was misdiagnosed during a hospital visit. Fortunately, Alicia caught the error before leaving the room and had the mistake corrected immediately. She emphasizes how crucial it is to fix these errors on the spot, noting that correcting mistakes later is much harder. Furthermore, errors in a patient’s Problem List—used by healthcare providers to guide future care—can lead to inappropriate treatments and confusion for other doctors.
Dr. Robert Oubre’s Perspective
Dr. Robert Oubre, a physician who calls himself “The Doctor of Documentation,” shares another example from his experience. One of his patients, who had severe autoimmune arthritis, struggled for seven years to get disability insurance and an insurance-covered wheelchair. The reason? Her medical records consistently showed “gait normal” because her doctor had repeatedly auto-populated the same note. This demonstrates how simple documentation errors can significantly impact a patient’s life.
Steps to Correcting a Medical Record Error
Correcting a mistake in your or your family member’s medical record requires diligence and persistence. Here’s a step-by-step guide on how to address these errors and how Primary Record helps families utilize new patient access laws to collect electronic health data in one place. This ensures their longitudinal personal health records are organized and ready for sharing.
1. Review Your Medical Records
Regularly reviewing your medical records is the first step in catching and correcting errors. Under HIPAA, patients have the right to access their medical records and ensure their accuracy. In addition, the 21st Century Cures Act further empowers patients by allowing them to access their electronic health records (EHRs) through the application of their choice, making it even easier to securely access and manage health information. With the increasing use of technology, you can now view recent visits, diagnoses, and notes more conveniently. Make it a habit to check your records after each visit to ensure everything is accurate and up to date.
- How Primary Record Helps: Primary Record is a family health record application that allows you to connect multiple patient portals for each family member, where you can quickly scan conditions, medications, procedures, vaccinations, labs, and visits to see if something new has populated that is inaccurate. In addition, Primary Record utilizes a Chat Assistant that helps families review a lot of health data quickly by asking “Can you tell me what new conditions have been diagnosed in the past year?”
2. Identify the Mistake
When you notice an error, be specific about what’s wrong. For instance, did the doctor list an incorrect diagnosis or medication? Was there a misunderstanding about a condition you don’t have? Pinpoint the error so you can clearly communicate the correction needed.
- How Primary Record Helps: With Primary Record, you can maintain an up-to-date and organized health record for each family member. Having all this information readily available helps you spot mistakes more quickly and ensures you have a comprehensive longitudinal personal health record to back up your case. Primary Record provides tools that allow you to quickly scan lists, search, filter active and inactive items, and sort information from A to Z or by date (New to Old), making it easier to organize your records and prepare to make your case.
3. Gather Evidence
Gather evidence like lab results, progress notes from specialists, or prescriptions to support your request for correction. If the error is related to a diagnosis, showing documentation from a specialist who treats the condition can strengthen your case.
- How Primary Record Helps: Primary Record was designed specifically for families to connect and download electronic health data from multiple patient portals, keep personal notes, and upload medical documentation to scan and make searchable. This makes it easier when you need to compile evidence to support your request for correction. Additionally, you can rely on the Chat Assistant to help outline the timeline and documentation needed to correct any errors in medical records, ensuring everything is presented in an organized way.
4. Submit a Request for Correction
Under HIPAA, you have the right to request that errors in your medical records be corrected. You will need to call the office or health system to understand their process for submitting a correction. Per The Office of the National Coordinator of Health Information Technology ONC’s website “The Guide to Getting & Using Your Health Records,” be sure to include your full name, address, phone number, your doctor or nurse’s full name and address, date of service, a short, specific, and clear explanation of what needs to be fixed and why, and a copy of the record page where you found the mistake
- How Primary Record Helps: You can use Primary Record to obtain the information needed to write a clear explanation of what needs to be fixed and why. Primary Record helps families recall dates and doctor names and retrieve documentation saved during the visit. Additionally, families can create a “Requests for Corrections” file folder in Primary Record to track when corrections were submitted and store all related documentation, making it easier to stay organized and follow up as needed.
5. Follow Up
Healthcare providers are required to respond to your request within 60 days. If they agree, the record will be amended. If they deny your request, you still have the right to have your disagreement noted in your record by filing an addendum. While the record should typically be updated within 60 days, the provider can take an additional 30 days if they provide a valid reason for the delay.
If your provider disagrees with your request, they’ll send you a denial notice. This notice should include:
- The reason for denying the change (e.g., they believe your health record is accurate and complete).
- Information on how to respond to their decision.
What to Do If Your Provider Denies Your Request:
- Reply in Writing: Send a formal letter stating why you disagree with their decision. Their denial notice should provide instructions on how to do this. If not, contact their office for guidance. Your response will be attached to your health record.
- Attach Documentation: If you choose not to respond, you can request that the provider attach your original correction request and their denial notice to the affected pages of your health record.
- How Primary Record Helps: Primary Record helps families keep track of notes, communication, and the status of requests all in one place. This makes it easy to follow up on your correction request and respond to any denial notices. If your request is denied, having your records organized in Primary Record helps you escalate the issue by providing a clear timeline and supporting evidence. You can also store the provider’s denial notice and your reply in the “Requests for Corrections” file folder for easy access.
6. Escalate if Necessary
If you believe the provider’s reason for denial is incorrect and this error could impact future care or insurance, you can take further action by filing a complaint. You can file a complaint on the Department of Health and Human Services website, where you can file your complaint electronically via the Office of Civil Rights (OCR) Complaint Portal. You can also seek legal advice if you feel the mistake could have severe consequences for you or your family member.
- How Primary Record Helps: Should you need to escalate the issue, Primary Record gives you the tools to present a comprehensive and accurate timeline of medical records and events, supporting your case for correction with clear documentation.
Conclusion: Taking Control of Your Medical Record
Medical documentation errors, from misdiagnoses to medication mistakes, can have serious long-term effects, impacting future care, insurance claims, and even legal matters. With increasing access to electronic health records (EHRs), it’s crucial for families to review and correct inaccuracies actively. Surprisingly, only 0.2% of patients submit amendment requests, which points to a gap in awareness. Many may not know they have the right to correct their records, even though nearly half of those requests are ultimately approved.
Primary Record equips families with the tools to organize and maintain accurate personal health records. As patients become more aware of their right to access their electronic health data securely in one place, Primary Record enables them to catch mistakes early. This ensures that when errors arise, they can present a well-documented case for correction. By actively managing their health narrative, families can prevent these mistakes from being copied into future records, ultimately leading to better outcomes.
