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.

I love the Patient Portal I have with my doctors at Duke University. My questions are answered, my reports are up and ready to read.

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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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@vic83

I may have misunderstood you. If I need to go to a different doctor/clinic, I tell them to send to the other clinics. For the actual scans, they say they have to "push" them out - I think it means they fax over to a specific number.
I work off of my computer - phone screen too small!

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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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@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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Thanks for the background! That is interesting to know! I wondered how they could "fax" such a thing. When I asked my first doctor to send my scans to Mayo Clinic, she mentioned "push" and others mentioned there was a fax number.
I will keep in mind your suggestion to get CD. So far, no problem to have larger clinics push to Mayo. How do these radiology images work with EPIC?
Wondering how long are these images kept on file in one institution? I ask because I have had issues in the past getting x-rays/scans from previous providers when living in another state. It would be nice to have them automatically follow the patient no matter where the patient goes. Like one central database where all clinical information on the patient is stored, easily available when needed. I hate filling out new form when I go to a new doctor.

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@vic83

Thanks for the background! That is interesting to know! I wondered how they could "fax" such a thing. When I asked my first doctor to send my scans to Mayo Clinic, she mentioned "push" and others mentioned there was a fax number.
I will keep in mind your suggestion to get CD. So far, no problem to have larger clinics push to Mayo. How do these radiology images work with EPIC?
Wondering how long are these images kept on file in one institution? I ask because I have had issues in the past getting x-rays/scans from previous providers when living in another state. It would be nice to have them automatically follow the patient no matter where the patient goes. Like one central database where all clinical information on the patient is stored, easily available when needed. I hate filling out new form when I go to a new doctor.

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Okay, here you PACS101. By law, 10 years or 10 years after 18th birthday. So if a baby is xrayed on his 1st day the images would have to be keeper for 28 years. Now that was really film days. As you could imagine that was a lot of physical space. Since everything is digital now we keep them forever. We just add more hard drives to a refrigerator size computer server.

Epic is a charting (equal to the old 3 ring binders) program. Images are stored on a PACS (picture archive communication system) network. So two different systems with two different jobs. PACS does send links to the chart system but that is just to make the doctors/nurses lives easier they are now really connected. Which is good because our Epic system goes down and the images can still be viewed because Fuji PACS is still up.

Your question about the information following you. Ha ha they tried it. Time for me to get on my soapbox. It failed miserably. I’m sure you heard of HIPAA (health insurance portability and accountability). Well the original idea behind it was to make health records portable. Except no one worried about that part. All anyone worked on was the accountability part. It ended up having the opposite affect. Back in the day we would just hand you your records. So the next time you have to sign more forms than you did for your mortgage, thank HIPAA. logisticly it had many issues too. For example you have different medical record numbers at the different hospitals. Your MRN at one hospital might match the MRN at another hospital. See the issue.

Hope that helps. Ask if you have any other questions

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I like having quick access to test results. Recently, I printed lab results, highlighted tests I wanted more clarification about and discussed with my doctor.

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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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You hit the nail on the head; doctors are so rushed in this whole health business model, that when you get to your 15 minutes with them you better be prepared and hurriedly get what you want answered in your allotted time. I have seen where health portals start documenting things done outside of your office visit: phones calls they have with you, or on behalf of you (sending prescription refills), and email correspondences with you. I have read where doctors and offices are now getting overwhelmed with the time needed with those, and we (and insurance companies) may eventually see the systems start charging for those. So if it’s going to come to that, look at your results ahead of time and be prepared to hit the ground running the 15 minutes face time you may get in person with your doctor once or twice a year.

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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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@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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@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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