Life with Chronic Conditions: Patient Portals

According to a study in Annals of Internal Medicine in 2020, approximately 90% of health care systems offer patient portals, but 15%-30% of patients use them.  In 2022, about 3 in 5 individuals were offered and accessed their online medical records or patient portals. Frequency of access has increased consistently over time. Individuals increased their use of apps to access their online medical records between 2020 and 2022, while web-only access to portals decreased. ASTP

 By logging into an on-line account, and/or clicking an app, a portal allows patients to review and interact directly with their medical information, bills, and more. The purpose is to help improve a patient’s health by having an easy way to access their data, make corrections, and basically track tests and findings so they can act earlier, more consistently and monitor progress in achieving health goals. Other advantages include:24 hour access; ease of scheduling appointments, paying bills, and managing medications; and increased transparency. 

 

However, there is a flip side, which I’ve been encountering more frequently. 

 

Recently a friend texted me pictures of their brain CT scan completed earlier that day. They were given a CD of the scan by the tech, and told to follow up with their doctor-standard practice at many places. However, my friend thought this was unique to them and was an indication of a serious problem.  When the results of the scan were posted to their patient portal two days later, they were obsessed with understanding every detail. 

 

And where was the doctor who ordered the test in all of this? His receptionist said they only went over results when patients came in for an appointment. Could this be done by Zoom/telemedicine? The receptionist said no. Had the doctor looked at the results or would it be something they would be checking for the first time during the appointment or just before it? 

 

With no evidence of a tumor, but something that looked a little odd, the radiologist recommendation was an MRI with contrasting dyes to rule out a rare diagnosis (less than 2% of the population has this condition and it has little impact on patient health). Still without speaking to the doctor who ordered the CT scan, they were trying to arrange for an MRI, and setting up an appointments with a neurologist. 

 

Another friend called a few months ago when they checked their patient portal and found they had a basal cell skin cancer. Again, they were getting the results before they talked to the dermatologist. Consequently, in both cases they consulted Dr. Google that uses AI, which has its own set of issues. 

 

These are just two examples of needless patient angst and frustration. Trying to interpret the results of tests and biopsies can be confusing at best, and while your portal is available 24/7, your provider and emotional support isn’t. 

 

Below are some of the other disadvantages of portals:

• Risk of data breaches: Check to make sure proper security measures are in place

• Literacy: Not every portal is the same and it’s very common for people to have multiple ones based on the hospitals and providers they use. Consequently, some are easier to use than others and what works on one doesn’t necessarily work for another. 

• Some providers may charge for messages and communications.

• Limited interaction and lack of communication with medical provider

• Information overload can cause unnecessary concerns

• Potential for misinterpretation

• Technical issues

 

Portals are now part of 21^st century healthcare. Some people really love them and find it helpful. Others become obsessed by them. Still others don’t use them.  Whether you use them or not, have a conversation with your provider about what works and doesn’t work for you. It’s like many aspects of life, choose what works and let go of what doesn’t.