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.

@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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@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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@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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@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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@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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@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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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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Where did our clinic notes, labs, and X-rays go?

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Hope I do not sound rude, but isnt it a choice whether or not to received our medical reports via our computers? And I think if you are prone to worrying about the results, wait until your doctor gets them and the doctor explains the results to you? My nurse practitioner was quick to send request for breast ultrasound regarding very strange large sore (looked like Paget's Syndrome a type of cancer) but local hospital has 4 month waiting list; so I phoned around and had done at nearly town in less than a week.... and I didnt ask for results but did ask them had they sent results to Nurse - they couldnt or wouldnt tell me; so I phoned the Nurse clinic could they tell me if received - No, couldnt tell me... (again did not want results, just did they get them)..... had to wait 2 weeks and make appointment to find out if Nurse got results and what they were. Was so anxious I paid $50 to join Pocket.Health (Canada) and in two hours had a copy of the ultrasound, which was just a black and white blur to me.... but short note saying no lumps found in breast. Such a relief to find out. However, yes could have been bad news, but I prepared myself for it. When I have blood work or urine test I can get results on Internet, one clinic for free and one $10 a year..however do not get them before have been sent (or seen) by doctor or nurse. So if doctor or nurse is on vacation for two weeks I dont have to wait til they return to office to find out! As an aside, many years ago had cancer treatment, long ago and that doctor has retired.... and you know I have NOT ONE THING to show that I even had cancer, how it was treated , why I had a drug reaction, etc.. etc. It just was not done in those days patients did not see their files and after ten years destroyed, so I have NOTHING and neither did other patients in those days.... it's a choice and if you prefer to wait until see Doctor, then that;s the best choice for you, but I prefer to see my results ASAP. Also in past DR. has told me all ok and it wasnt: thats just not right! However I do print out all just in case !!

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@lacy2

Hope I do not sound rude, but isnt it a choice whether or not to received our medical reports via our computers? And I think if you are prone to worrying about the results, wait until your doctor gets them and the doctor explains the results to you? My nurse practitioner was quick to send request for breast ultrasound regarding very strange large sore (looked like Paget's Syndrome a type of cancer) but local hospital has 4 month waiting list; so I phoned around and had done at nearly town in less than a week.... and I didnt ask for results but did ask them had they sent results to Nurse - they couldnt or wouldnt tell me; so I phoned the Nurse clinic could they tell me if received - No, couldnt tell me... (again did not want results, just did they get them)..... had to wait 2 weeks and make appointment to find out if Nurse got results and what they were. Was so anxious I paid $50 to join Pocket.Health (Canada) and in two hours had a copy of the ultrasound, which was just a black and white blur to me.... but short note saying no lumps found in breast. Such a relief to find out. However, yes could have been bad news, but I prepared myself for it. When I have blood work or urine test I can get results on Internet, one clinic for free and one $10 a year..however do not get them before have been sent (or seen) by doctor or nurse. So if doctor or nurse is on vacation for two weeks I dont have to wait til they return to office to find out! As an aside, many years ago had cancer treatment, long ago and that doctor has retired.... and you know I have NOT ONE THING to show that I even had cancer, how it was treated , why I had a drug reaction, etc.. etc. It just was not done in those days patients did not see their files and after ten years destroyed, so I have NOTHING and neither did other patients in those days.... it's a choice and if you prefer to wait until see Doctor, then that;s the best choice for you, but I prefer to see my results ASAP. Also in past DR. has told me all ok and it wasnt: thats just not right! However I do print out all just in case !!

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I have the “MyChart” app and all the hospitals I ever visited have everything about me. Including doctors notes (buried at the bottom with a small font). I can also send messages instead of visits to my doctors offices.
Try it. You can link all the hospitals together. So I get my results almost as soon as the doctor attests to the findings. Also when the information is typed into their computers it automatically goes to my smartphone.

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