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.

When my test results quickly show up in my Patient Portal, my Nurse Navigator from the cancer center I have been with since 2019 has access to my Portal and we go over the results together over the phone. This is so helpful for the majority of patients who can't decipher the technical meaning of the results. Saves a lot of stress & worry for them.

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I have 5, yes FIVE, different patient portals. Some of my doctors can see results from more than one portal, but only my Primary Care Physician can see all of my results. My tech skills are pretty good; yet even so, dealing with multiple portals is stressful.

One doctor has set up his portal site but has no information posted in it and has not provided directions for how to join it.

I cannot access the portal of my most significant specialist, even after spending close to 3 hours with 3 different tech advisers. And that doctor's office prefers the portal to phone calls.

Around the year 1999, then vice president Al Gore identified the problem of multiple portals.

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@contentandwell

@collegeprof I have doctors at multiple hospitals and the portals vary greatly. The hospital my PCP is at has a terrible portal but the portal that many of my other doctors are on, Epic, is excellent. With some of my doctors I get the written report at check-out but that seems to be less common with many of my doctors and the message on the portal is there within a day.

Personally I do love the portal for the ability to write a note to the doctor that I know will be seen as I wrote it, not a spoken message that can be passed on to her inaccurately.
JK

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Excellent point about accuracy of messages!

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I may be repeating earlier comments - but I like getting the reports. In my experience, doctors often tell me only what they decide I should know, and they leave a lot out. It feels condescending. Patients shouldn't be treated like children. I can understand how some reports could be frightening, e.g. if they're about possibly life-threatening conditions - but a lot of the time, they're not scary, just informative.

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I had 3 MRI's and a PET scan done a couple of weeks ago to make sure my breast cancer hadn't returned. (all it showed was arthritis.) In both incidences the radiologist and doctor called me that night. I was able to discuss what I understood about them and then felt much relief.

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@annewoodmayo

I have 5, yes FIVE, different patient portals. Some of my doctors can see results from more than one portal, but only my Primary Care Physician can see all of my results. My tech skills are pretty good; yet even so, dealing with multiple portals is stressful.

One doctor has set up his portal site but has no information posted in it and has not provided directions for how to join it.

I cannot access the portal of my most significant specialist, even after spending close to 3 hours with 3 different tech advisers. And that doctor's office prefers the portal to phone calls.

Around the year 1999, then vice president Al Gore identified the problem of multiple portals.

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I also have several portals but was able to link them. Now all the tests, appointments etc are in one spot. Can you link yours?

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Patient portals are a BLESSING. Let's face it, doctors are busy, all of the world is understaffed, there are mistakes made, and sometime people are just careless. There's ONE of us who is 100% vested in our medical care and needs to be on top or reports and results, because all of the medical folks are trying to manage MANY patients. We need access if we choose to be proactive, but we must adhere to common courtesy rules of not engaging with doctors on the information until a required amount of time has lapsed for them to react, research, and development treatment plans, if necessary. In 2019, a major medical hospital did a CT scan on my head while admitted for a surgery to see if I had a stroke after a delirium reaction to drugs they had administered. They told my husband and I it was negative for stroke. 8-10 months later, I was moving to another state and collecting medical information that had since become available more easily on line. I saw the old CT report and was ALARMED that the CT scan mentioned there was an abnormal growth in my neck that needed correlation with an ultrasound and possible biopsy. That facility was 3 hours away, so I took the report to my PCP (who the hospital had also not shared the report with as required months earlier), and she arranged urgent testing and appointments, starting in one state and finishing in the state I was moving to in 3 weeks, which was extremely difficult because I discovered the 2019 report in March 2020, as the world was shutting down for Covid. All of these appointments were necessary, and "urgent", because that abnormal growth this medical hospital didn't tell me about was of course Cancer. That hospital organization first said it was a computer glitch, and then sadly added that the purpose of that CT scan was to see if I had a stroke, and that they properly told us I did not have one. They said that this (cancerous) growth they discovered was just an incidental finding in the CT scan, so it didn't have to be communicated!!!! So, I find it extremely important to read reports in the event a mistake can be made in not getting information you need. This includes visit summaries as well - especially with dictation software, some reports have meaningful errors, so if it's significant enough to need correction, you should ask that it be. (example, a report said I had a certain surgery, when I had Not had the surgery). Again, I sress the importance of being fair and giving doctors the respect of adhering to their guidelines on reviewing results and what/how things are to be followed up with you; I really think the huge majority of doctors and offices are proficient at doing so.

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In my 2+ years of dealing with cancer I have found there are two types of patients: those that are in denial, bury their heads in a pillow and say "whoa is me on an endless loop"; the second group wants to know everything possible about cancer both their own and general information. The portal is a friend to the second type of person and a for to the first.

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I want to know asap, even b 4 my Dr. If necessary, so I have time to absorb it with myself & Family, then I reach out to my Dr. & he does call back asap, as I had Larynx Cancer, had 2 rounds per day of Radiation
treatment.last treatment3/22 .it was rough, but you get through it, no recurrence since Oct/22
Still have side effects, getting back to My Chart, best thing they ever did & it's transferred to all my other Dr.s all my results..

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I love the Mayo patient portal, its so cool to actually see your MRI, X-ray, ect.
There are times I have messaged my PC because I was not sure about a medical term used or had a question.
It's also helpful to look up what certain things mean, like blood work.

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