The Patient Portal—Help or Hindrance?

Posted by Becky, Volunteer Mentor @becsbuddy, Nov 1, 2022

We’ve always talked about quick access to all the information we want, when we want it. Gone are the days of ‘snail’ mail and encyclopedias. Now we have Patient Portals! And they are here to stay!

In 2016 the Cures Act went into effect, but the part that pertained to access to patient records wasn’t effective until April 2021. The Dept of Health and Human Services began enforcing the rule which declared that a hospital or doctor must allow access to a person’s health information. Failure to do so could result in fines for the doctor and hospital. Thus, the Patient Portal.

The result is that as soon as you have lab work, x-rays, CT scans, or a diagnostic test, YOU will receive the information (often before the doctor does.). This has led to much confusion and fright for many patients. A test result, read by a patient, out of context, or without a doctor’s explanation, can lead to confusion and anxiety and un-necessary emotional harm. I know this personally, when I received the results of my MRI well before my doctor. Seeing a report that stated “new lesions in areas of the brain,” really freaked me out!

In today’s world of instant gratification with computers, the emotional cost of instant access can be high.

- How have you been able to handle reports on the Patient Portal? What suggestions do you have for other members?

Interested in more discussions like this? Go to the Just Want to Talk Support Group.

@vic83

I worked in high tech industry and led projects for implementing universal databases. It takes time (and patience) to educate people. And sometimes the right person (as someone who understands how a database works and the world of the user) is not the person chosen to implement project. But well-designed databases offer a tremendous opportunity in medicine. It makes it easy to track symptoms and treatment outcomes across a grand variety of clinical pictures.
The idea of having a patient portal tied to a database of information is to make it easy for people to change doctors and to see the results of their tests and doctor's notes. But uniformity is required to segment things correctly in the underlying database - maybe that is why they use generic names of drugs so as not to confuse brand names and generics .
Clinics are supposed to be able to see each other's information on the patient - that is IF you are their patient. That is how they see your whole clinical picture...and also avoid duplicate tests. In the case of a medical emergency that will be critical!!!

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I have database experience also. Your comments were well made but led me to conclude that I wasn't clear about one of my points. I've been a patient of the Mayo Clinic for eons. They were the first in my experience with a medical facility where the physicians were all able to share data with others at Mayo by the minute ... you leave one appointment and the MD at the next one knows what the first did, the assessment and the like. In my comments I may have used the word "clinic" in a way that is being interpreted differently. My experience where data was shared was by a portal vendor selling their systems to two different medical facilities not at all connected with each other in any way. The data shared inappropriately and without my knowledge or permission was very dated and some was incorrect. Also I had considered your very salient point then about emergencies in that situation. If not caught by me early on, it could well have been quite serious.

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I am soooo grateful for patient portals! Without patients portal I would be in the dark about many different aspects of my Heart Failure. My Cardiologist present and past never has/had the time to go through all the different test results, and since my heart failure has caused a cognitive decline, I wouldn’t have remembered any details anyway.

I can look at lab results and doctors notes, and decipher them by simply doing research, then asking my cardiologist specific questions regarding concerns I have. It has made everything so much less stressful for me. I am definitely far more informed of my disease than I would have been without access to my medical information. 🙂

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@californiazebra

I personally like to read reports before I talk to the doctor because I want to have time to digest everything and have my questions ready. There is nothing more frustrating to me than to have the doctor just read and discuss the impressions section, then give me a copy of the report so when I get home and read the details I'm left with questions. It may be a long time before I see that doctor again.

Sometimes there are incidental findings in a CT or other scan, but my specialist doesn't mention them if they are not related to the condition that doctor is treating me for. I find a lot of specialists have tunnel vision and only care about (or are knowledgeable about) their little piece of the puzzle. Or they may not want to bring up incidental findings because they don't want to take the time. If I ask questions, they can either explain it's something common (like liver cysts) or refer me to another specialist if there is a concern.

I do think it really depends on your personality. I like details. I'm pretty medically savvy especially about my own conditions. If I don't understand something, I research it so I can have an intelligent discussion with my doctor. If you're unfamiliar with the medical terms, you're less likely to understand and remember what the doctor tells you.

Some people don't like to know details and just want to be told what to do next. That's not me. I want to be sure everything makes sense. I believe you need to be informed in order to be your own best advocate. People that don't want to know the details are not likely to use the portal anyway.

Typically, when I read a report that has posted, I'm going to be seeing the doctor in a day or two to discuss it anyway so any misconceptions on my part will be cleared up soon. When we have to wait too long for a report, we can start to imagine the worst. Anticipation can be worse than reality. To me, there are more pros than cons to reading the report in advance of the visit.

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I whole heartedly agree with your comment! I would be a walking stress ball if I had to wait to get my test results from my doctor, which could be several days later. I am so incredibly grateful to have access to my records.

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Because I’m familiar with medicine I can usually understand what I read but sometimes I have to get my husband to interpret as he’s a physician. I freaked once on the drs verbiage he chose to use on a ct scan. Ultimately I get my hubby to read results in case it’s bad because I freak out if it is. Overall access to internet and portals have probably caused more harm than good. Sometimes ignorance truly is bliss!!

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@colleenyoung

Hi @buckwild, I'd like to add my welcome. I think you're wise to get tips on using the Mayo Clinic portal from fellow members here. @johnbishop has given a few tips that may help.

You may also be interested in this related discussion specifically about the Mayo Clinic patient portal:
- Mayo Clinic Patient Portal: How do I find it? Do you use it?
https://connect.mayoclinic.org/discussion/mayo-portal/
If you'd like to contact someone for support in using Mayo's portal, you can click "Get Help" in Support on the portal. Here's the link to call or submit an online request:
“Get Help” https://onlineservices.mayoclinic.org/patientportal/content/get-help

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I use my doctor’s portal. I just leave my message then by 4:00 that day I get a new prescription if needed or an increase in dosage.

I am not charged yet for the service.
I understand that Mayo may charge a fee for using the portal for various purposes. This is new information that I didn’t know about.
I will keep my PCP portal as it’s still free so far. They call me regarding my submission within 3 hours and any new prescriptions are filed from my Doctor directly to my delivered medication as he orders it from his laptop and by 4-4:30 my meds are delivered straight to my office.
I was on 300 mg of Wellbutrin XL in the morning and he upped it to 450 mg mornings. I just started today so I will wait until it starts working before I message or see him in person if the increased dose has bad side affects.

It shouldn’t because I took the GeneSight DNA test and Wellbutrin is considered ok for me. We’ll see.

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I love it. I get to read doctor's notes which is helpful because I don't have to be bothered taking notes during the visit. Also if I have a question I post it to the doctor and generally get an answer within 24 hrs. I find it saves time.

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@ljeva1968

Because I’m familiar with medicine I can usually understand what I read but sometimes I have to get my husband to interpret as he’s a physician. I freaked once on the drs verbiage he chose to use on a ct scan. Ultimately I get my hubby to read results in case it’s bad because I freak out if it is. Overall access to internet and portals have probably caused more harm than good. Sometimes ignorance truly is bliss!!

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Mostly a blessing I think, I have found the portals very useful. The trick is to NOT try to interpret those results just because you can read English 😊. Curious to know what your MD husband thinks of the same question.

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Well my hubby, not having the illness anxiety I have, probably thinks they’re great lol. He doesn’t really understand how helpful or damaging they can be because he’s pretty healthy and when he’s had acute health issues he doesn’t worry. He simply waits patiently to see the doc face to face. In retrospect I’d say the portals can be good in that occasionally my hepatic/GI nurse practitioner will actually respond to questions or concerns I send on the portal. I have to communicate with him that way often because appointments are scarce and his staff are horrible, once they didn’t answer the phone for 2 days. As far as communication directly with my actual hepatologist….that’s laughable. I can’t see him until mid next year.

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Let me add, I’d probably love my portal if the hepatologist nurse practitioner and/or physician actually posted their notes on there but they don’t. My labs aren’t there either and my med list is all wrong. They have some of my diagnoses wrong. My disability attorney warned me medical care here is bad. And now I see. Exhausting.

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I cannot get on the patient portal because my doctors employees are too busy to show me how it works. When I ask they say I am already on it but what they do not understand I do not know how to access it. Can you help me? Theresa

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