IF OTHERS CAN READ YOUR CHART, WHY DON'T YOU?!
Your health information is online. You may not like it. Perhaps you treasure your privacy - you avoid social media, limit credit card transactions, and disable your phone’s GPS tracker. Nonetheless, if you have ever visited a medical clinic or hospital, your health data is probably out there.
But that’s actually a great thing and you should take advantage of it. Let’s find out how and why.
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Historically health records have not been a valuable tool for patients, but rather a mystical black box of information. People were forced into the defeatist camp ("I don’t know, doc. It’s all in the chart. You tell me.") or the anxious camp (“What are you writing now?!”). Meanwhile a staggering 49% of patients do not recall their physician’s recommendations one week after their visit. Patient advocates demanded something better and the Open Notes movement was born (https://www.opennotes.org/).
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Opening up health records, including provider notes, was hard for the medical community to adopt. Providers feared an onslaught of questions and demands. A recent study showed that outpatient physicians spend on average 16 minutes on the computer per appointment, which is extraordinary considering most visits are 10 - 40 minutes long. Providers quailed at the possibility of spending more time with these records. However, the demand for physician time actually decreased and patient satisfaction increased. Now most clinics and hospitals make online medical records available to patients.
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You shouldn’t plan however on your provider being the lifetime keeper of your health information. The idyllic image you may have of growing old with your doctor is sadly fading away. Doctors move, or you may move. Doctors retire or change to administrative roles. Your insurance may change and your current provider is no longer covered. Perhaps you also travel a lot. It’s very easy to find yourself saying, I need a new doctor.
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You (Patient): “Hello, I need a new doctor. My old one moved away. I asked that office to send you all my records.”
Me (Doctor): “I’m sorry, I haven’t received anything and you’re not in our system here so unfortunately I don’t know anything about you yet.”
What follows is a frustrating and highly unsatisfying appointment for both of us. This scenario was the rule rather than the exception in my experience. But if you take control of your health data, the conversation could go something like this:
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You (Patient): “Hello, I need a new doctor. My old one moved away. I have all my records here on my phone.”
Me (Doctor): “Great, welcome. Let’s get started.”
What follows is a more efficient and productive visit, though with time spent manually transferring your data into the new system.
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There is the potential for an even bigger step forward by creating a type of master medical chart available to all providers and which you control.
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You (Patient): “Hello, I need a new doctor. My old one moved away. I have already given you access to my online medical record.”
Me (Doctor): “Great, welcome. Yes, I saw you granted me access and have read your chart. Let’s get started.”
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While the development of such a master chart is uncertain and controversial, health care’s transition to a digitalized world has made it possible for you to lead your own medical care.
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The electronic medical record (EMR), a digital version of the traditional paper chart, has been widely adopted across the U.S. in the past ten years and is now the norm for collecting and managing health information. The strength of the EMR lies in the electronic health record (EHR). You can think of your EMR as your paper chart in your doctor’s office, while the EHR is a collection of your charts from all your medical providers across a variety of healthcare settings.
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When I worked in primary care, I reviewed a patient’s EHR before his or her visit. It helped me to be on the same page as my patient. I could review, for example, a recent cardiologist note or a report from a hospital stay. Multiple studies show that EHRs are improving patient care and health. They can be lifesaving in emergency situations, minimize medical errors, and promote treatment coordination between providers.
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But they only help if the information is comprehensive, accurate, and available to healthcare providers. You can ensure this by embracing your medical records.
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What can I do in my health record?
You can read your provider’s visit notes, especially if you are confused or have forgotten something. You can review your medical diagnoses. You can read your medication list and confirm names and doses. Some platforms allow you to track your vital signs, such as weight and blood pressure, allowing you to self-monitor changes. You can see your lab and imaging results, such as blood tests or an x-ray, before discussing with your provider. You can request corrections if you note errors. Some programs also let you schedule appointments, make payments, and contact your providers via e-mail.
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How do I access my health records?
Sign-up! Clinics usually explain the process when you check-in. You will need a username, password, and the website address.
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Of note, what you have access to is something called a patient portal. Your information is published from the EHR to your portal. Some portals are very basic, allowing you read-only access. Others provide more capabilities and allow you to create your own personal health record (PHR). So while the EHR is controlled by the health organization, and a portal provides a snapshot of your chart, a PHR is something you manage and own. You can add to it, for example with home blood pressure readings or daily weights, and you can share it.
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If your clinic or hospital provides a limited portal view of your chart, you may want to consider purchasing a private PHR system. For example, Apple has a PHR application which facilitates data transfer from EHRs to an iPhone.
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Who owns my health record?
Ownership in the legal sense is complex and varies by state. But for practical purposes, the healthcare organization “owns” your EHR in most cases, while you maintain the right to access it and request changes. This is because the organization controls the EHR software and the provider writes his or her professional recommendations, but it is all about you. You do own however your PHR, which as stated above, may be automatically synced to your EHR depending on technical abilities.
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What about my privacy?
Of course, privacy is a concern. EHRs are protected by the same HIPAA protocols (Health Insurance Portability and Accountability Act, a U.S. privacy law created in 1996) as paper charts, with additional technical requirements to promote online security. Healthcare providers are required to give you a Notice of Privacy document that details how your information will be used.
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Unfortunately, data breaches still happen. This is an important issue in the EHR industry as it works to improve record access while maintaining privacy.
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Meanwhile, your information is out there, so use it to your benefit. Use smart practices, as you would perhaps with online banking. Create strong passwords, don’t share passwords or personal information, keep your devices updated and use secured networks.
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Will all doctors and hospitals be able to see my health records?
Not if you don't bring them with you. There are many EHR vendors across the U.S., even within the same city, and each maintains its own record system.
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Some EHRs grant non-participating providers read-only access and a few “talk to one another.” That is called interoperability, facilitating the transfer of information from one system to another. While interoperability is generally agreed to be a benefit for patient care, it may weaken patient privacy. This debate continues today.
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What if my provider doesn’t offer online access?
You still have a legal right to access your notes, though they may be in paper format and delayed. You may elect to become an Open Notes advocate.
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It’s your body, your health. Talk to your doctor’s office today and sign-up to take charge.
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Written by Jill A. Monteiro, MD, MBA
Published May 2020