Today, patients are encouraged to use patient portals to keep up to date with lab work, appointments, payments, and doctor visits. In theory, this is a great idea, but complex patients can have multiple patient portals, making the system more fragmented, disconnected, and time-consuming.

To illustrate the point, I wanted to share an article that Morgan Gleason, a 21-year college student with a chronic medical condition, wrote in my professional organization’s publication, CMSA Today. The article was titled: Why Patients Need Full Access to THEIR Medical Record, Morgan shared her experience of being a patient with a complex medical condition. She said: “My medical records are stored in silos at different doctors’ offices, hospitals, labs, and surgery centers. I have 23 different patient portals that all have different versions of my information, which are often outdated or incomplete. Only one of them lets me see the office visits from my doctor’s appointments. Not only do I not have access to my information, but my doctors are often missing critical information they need to treat me. The burden falls on me, the patient, to try to keep up with all of this information and share it with them. It makes me wonder why this is happening, when in reality, I am the only member of my team, out of all my doctors and nurses, who is not being paid to help keep track of everything! You can imagine that, as a 21-year-old, I would much prefer having an app on my phone that updated as my doctor’s electronic records system was updated after my visit. Having access to my information would allow me to know what was going on and share the information with other providers who might not be on the same system.”

Recently, a new Federal Rule was announced, doing just what Morgan is asking to happen. As a result of the 21st Century Curse Act, Patients are more in charge of their health records, allowing them to be better informed so they can make informed decisions regarding their care. In addition, having access to information allows them to help to coordinate their care with their health care team to meet their needs.

It is recognized today that people need more power/control/say in their health care, and access to information is key to making that happen. Open Notes, a research organization, has studied that when patients have access to their Medical Records, they are more informed and make better healthcare conditions that help improves the quality of care they receive and control escalating healthcare costs.

Unfortunately, we are not there yet, but we are getting closer. All patients need to use their voices as Morgan did to make the government mandate is implemented in across the care continuum.

In 2021 when we can make airline reservations on our phones, why can we not access our healthcare information the same way? The technology is in place, yet the ‘systems’ are just not willing to give up their control.

Here are some steps that you can take so you are an empowered patient.

• Set up your patient portal with the doctors you see the most.
• Check your portal often so you can become familiar with how it works.
• If you have questions, there are people in place to help you navigate your patient portal. Ask your doctor’s office who to call if you have questions.
• Only share your patient portal with people you trust.
• If you need help interpreting the information in your portal, your doctor should help you. If your doctor can’t or won’t help you, find a case manager or a patient/health advocate to help you. That is what they do! Help you understand your care and medical information.
• Stay informed and up to date as changes occur in healthcare.
• Use your voice if your doctor or hospital does not have a patient portal. Send a letter as to what you would like to see to make the system work better for you to your doctor, your insurance company, and your members of the House of Representatives and the US Senate.

If you are using your patient portal to manage your healthcare better, please drop me a note to connect. I would love to know how you are doing and what challenges you have had doing this.

Reference to learn more:

1. If you would like to read Morgan Gleason’s article; Why Patients Need Full Access to their Medical Records in Issue 3 of CMSA Today, click here to access the digital issue
2. Open Notes is an essential resource for patients/caregivers and all healthcare professionals to stay updated on information sharing. Click here to learn more and get information to support Patient Information Sharing.
3. To learn about the 21st Century Curses Act, click here.