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.

Having access to my medical info on my patient portal is extremely important to me; I like to be in control because it enables me to protect myself.
How do I handle it? Simple! I program myself never to panic in front of new info that can make me anxious. I do not worry until I have receive a clarification from my doctor. It is just a question of mindset.

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@magnolia12

How do you get them corrected? I showed the doctor how this statement was untrue and he refused. It is a patient safety issue he ignored.

Patients should have the ability to add the correction notes ourselves!

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Sometimes the girls that comes in before the doctor makes the corrections for me...good luck !

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@magnolia12

How do you get them corrected? I showed the doctor how this statement was untrue and he refused. It is a patient safety issue he ignored.

Patients should have the ability to add the correction notes ourselves!

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Interesting they get to write notes on us, but we don't get to write notes on them!

I think it's so important to write reviews when we feel that something isn't the way It should be. It alerts other so they have a better understanding of what's really going on.

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@gpigford

No one manages the images but me. Even the doctors can't make changes to them after they are done. It is considered part of the medical record and lets say it is itched in glass. That way if anything happen later and it goes to legal everyone can have faith in the system. Even I cant delete them. I can hide them so the average user (doc and nurse) cant see them but they are always there.

the main reason images are not in portals is a matter of speed. These files are hugh. To transfer an image across a network like a portal would take about 2 minutes an image. Now do the math of a 2000 image MRI. It also requires a program to view them (DICOM Viewer). They are not .JPG file but .DCM files. So most people don't have a program on their computer to be able to view them (you can download free viewers) You can, and I would suggest, at the end of any exam ask them to be burned you a disk. We do it for free. I would think most do. And that disk contains a built in viewer. (FYI, most viewers do not work on MAC, PC only. Sorry MAC people). You should be able to see the radiologist reports in portals.

Hope that helps.

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Very informative, thank you. I would like access to the database so I can copy them myself and share as needed

I ask for the disc at the end and am not allowed to have one.

I saw one of mine in Ambra as pending But it was resulted in my chart weeks ago.

Now both the imaging and report have been removed. This was after i complained about something.

Seems there's a way around everything.

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@kellysg

I absolutely love the portal! Getting test results back prior to meeting with my doctor allows me time to look things over, do research, and start making a list of questions. It used to be that when I would meet with my doctor to get the results, I would leave and then have a million questions, and we all know how hard it is to communicate with your team, playing phone tag, etc.

I understand the portal is not for everyone so you just have to do you. Getting labs and scans done, then waiting for a week for results used to create more anxiety for me. Now I actually get some of my blood results back while I'm still waiting to scan. And more often than not, I have scan results before I get half way home (I drive a little over 2 hours for these appointments).

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Hello @kellysg and welcome to Connect.

I'm with you on the "Love the Portal" fan club. For me, at least, it reduces anxiety to see the results right away. With regards to scan results, I appreciate having the opportunity to read them (even if I don't understand everything) and then to look up unfamiliar terms and develop a list of questions to send to my doctor either through the patient portal or at my next appointment.

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@magnolia12

Why can't I, as a patient, have access to this great technology, this PACS system so that I can manage my own images?

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No one manages the images but me. Even the doctors can't make changes to them after they are done. It is considered part of the medical record and lets say it is itched in glass. That way if anything happen later and it goes to legal everyone can have faith in the system. Even I cant delete them. I can hide them so the average user (doc and nurse) cant see them but they are always there.

the main reason images are not in portals is a matter of speed. These files are hugh. To transfer an image across a network like a portal would take about 2 minutes an image. Now do the math of a 2000 image MRI. It also requires a program to view them (DICOM Viewer). They are not .JPG file but .DCM files. So most people don't have a program on their computer to be able to view them (you can download free viewers) You can, and I would suggest, at the end of any exam ask them to be burned you a disk. We do it for free. I would think most do. And that disk contains a built in viewer. (FYI, most viewers do not work on MAC, PC only. Sorry MAC people). You should be able to see the radiologist reports in portals.

Hope that helps.

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@nonobaddog

The portal has been a great advancement in health care for me. I never understood why my information was held captive away from me.
I did have an experience very similar to yours where a CT scan of my lung cancer found some new spots. This was very concerning until I had a consultation with my care team.
Overall the quick access to my information is great. Patients will learn how to deal with this since this is how it should have been forever.

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Absolutely. Amd we should have access to thr entire record-real time.

Through Epic Care Everywhere, our doctors have instant access to our records from multiple systems, but patients are not allowed to access them. This is not right.

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@mfgw

OMG, get a new doctor! If your doctor is confrontational, move on!

I have had to have many untruths removed from my records. Too many techs that are in charge of our test results are sloppy, inattentive, and just do cut and paste from previous test reports.

I always read my chart and voice my questions. You are the best representative of you.

Don't accept sloppiness and ineptitude of those that cannot or refuse to properly do their jobs.

You must take the responsibility of you.

The patient portal is only a tool. A means of communication between us and our medical teams. Databases can be corrected. It may take getting to the right person, but it can be corrected.

Take care, keep your head up, be empowered! Don't let any person on your medical team be rude or mistreat you!

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How do you get them corrected? I showed the doctor how this statement was untrue and he refused. It is a patient safety issue he ignored.

Patients should have the ability to add the correction notes ourselves!

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@gpigford

Hello, @vic83 I am what is called a PACS Administrator. I build and maintain the computers that hold and distribute radiology exam images. Every hospital has a network of computers that store your exam images. Just like your home computer holds files of your family photos but with a little more finesse.
We use 3rd party companies that set up connections to many hospitals. We than “push” (officially called a DICOM data transfer) images and bounce them around till they get to where they need to be. Keep in mind this bounce only takes a few min. It however is only images, no radiologist reports. I would also strongly recommend asking for a disk of your images. Nothing is more dependable at delivery than you. But pushing them works really well.

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Why can't I, as a patient, have access to this great technology, this PACS system so that I can manage my own images?

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Works great for me. Those who don't want the results can simply not log in. Modernizing patriarchal medicine has moved at a snails pace-why try to reverse that trend?

Gives me a chance to learn more about the results so that I have the right questions to ask. Otherwise would not be prepared to ask questions.

It's more empowering. Moreover, it would be most beneficial for patient to have access to the entire chart. Why is it justified to block us from our own information?

Why must I go through medical records to get the rest of the information when the capability exists to access it myself?

We talk about burden to providers all the time, but let's face it-the system is burdensome to patients, who have fewer resources to deal with the burden as compared with large profitable health systems.

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