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.

@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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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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@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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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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@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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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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@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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Hi, I live in Canada, where we can request access to our records and no one can deny us that, but they are not sent to us automatically. I actually think that this is a really good idea. In this age of multiple specialties, I find doctors are often asking me questions that I don’t have answers to because I did not receive or ask for the reports that were generated. Sometimes I still forget to ask. Since I have an extremely rare illness. DADS-M I believe it’s important to receive all of my healthcare tests and information right away. I would prefer to have a system that automatically sent me reports. I have spent a lot of time researching my illness and I find with the Internet now and with the new AI‘s available it’s very easy to interpret any information on these reports that I do not understand already. We are all different. I do better if I know exactly what’s going on even if it’s scary. Some people would rather not know. You do not have to look at this information if you don’t want to. Our medical system is getting very complicated and without my lay understanding of medical issues, I would’ve been prescribed drugs I am allergic to. And have also prevented other medical mistakes which would’ve been devastating. I don’t blame the doctors so much as the system, where there needs to be a central hub for communication Between Doctors. With the way things are now I believe patients need to take some responsibility for their care if it is possible. Clearly, this is not always possible. Perhaps and I don’t know how your system works in the US but maybe you could designate someone else to receive this information if you don’t want to get it directly, or as one person suggested send it to a trusted friend or relative to hold or interpret. The unfortunate truth in my situation is that none of my doctors have heard of my illness before, and have no understanding of how my particular issues are cross connected with other specialties, and that I do not react normally to many of the procedures and drugs that are usually given even for common conditions. I have allergies to most drugs as well. On balance. I think your system of sending reports to patients is great relative to the problems that can be easily overcome by either ignoring the information, or by giving it to someone else.

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@joaf37

I am dealing with 5 of them. I have some basic issues with portals in part from having been in the IT business some time ago. In my current business role I need to access numbers of web sites daily. My issues are the same with web sites and medical portals. Every one thinks theirs is crystal clear. Few are. I find the medical portals overly complex even to just access them and to try to find the basic needs. Readers here may all know that there are some "software providers" that many medical faculties use. I unfortunately discovered that two medical clinics that subscribed to portal software from the same vendor were also sharing information about my medical results. The two clinics had no connection with each other at all. Another issue is your medical history and Rx you are taking or have been. They often only use the literal medical Rx names; so, I too often don't know what they are referencing or they are overly complex when you recognize them and need to change them. Just some thoughts here.

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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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@olderdiva12345

These new strains of Covid and the vaccines are a delima. I spoke with our pharmasist this morning and he told us that the new vaccine can cause problem with the heart and can provoke any cancer that may be in your system. We have decided NOT to do this...our choice as it is yours. Please talk to people and get as many opinions as you can before you decide. This is a Physer (sp?) product and is VERY new.

He also said that if you do get Covid it is normally and likely to be mild...again, to each our own decisions. Good Luck all.

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I have had 5 shots. My doctor told me another shot is unnecessary and that I will be fine if I get COVID. I am not aware of the cancer risk, though. and will check this. I only got the Pfizer vaccines.

Thanks.

Cindy

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