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.

@contentandwell

@karen1945 I also like the patient portal to send messages because then what I want to say to the doctor gets to the doctor in my words, not interpreted by a nurse who answered the phone. Also, for me it works well because I have a hearing impairment and it's much easier to communicate in writing than on the phone.
JK

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I meant to add, that my hospital seems to get results from tests just about the same time that I do and if anything is amiss I know I will be getting a call that day so I never go long not knowing what something negative might indicate.
JK

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@pml

My husband has lung cancer and we love getting the test results online from his CT scans. It's good to know as soon as possible what the actual situation is; whether it's good or bad. My husband's last full body scan showed a very small amount of growth of 2 nodules but there were many nodules that were unchanged which is good. Also there were 11 mentions of other parts of his body being "unremarkable." If it's "unremarkable" it can't be bad!

In other types of tests, early information helps you take steps to improve the problem. If you are low in a certain level such as Potassium, look up what foods have Potassium in them and eat more of them. Also when you come across a term like Creatinine; (What is that?) just go to the Mayo Clinic and look it up.

Patients need more information not less; especially when their doctors are very over worked these days and can't often see them for weeks or months.
PML

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I totally agree. Sorry you and your husband are dealing with this. At least you are with the very best medical yeam in USA!! I will pray for each of you. HE IS ALWAYS HERE FOR US AND OUR DOCTORS. MAY HE BLESS EACH OF YOU!!!!!

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@contentandwell

@karen1945 I also like the patient portal to send messages because then what I want to say to the doctor gets to the doctor in my words, not interpreted by a nurse who answered the phone. Also, for me it works well because I have a hearing impairment and it's much easier to communicate in writing than on the phone.
JK

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Absolutely! I might add that I find it’s a lot easier to explain what I mean in a text rather than the phone. I really don’t like talking on the phone.

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@karen1945

Yes! I find the response is quicker when I use the portal rather than the phone.

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@karen1945 I also like the patient portal to send messages because then what I want to say to the doctor gets to the doctor in my words, not interpreted by a nurse who answered the phone. Also, for me it works well because I have a hearing impairment and it's much easier to communicate in writing than on the phone.
JK

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@lacy2

IN 1985 I was treated in Toronot for cancer of cervix stage 2. I have NOTHING from my file/s from the doctors I saw prior to treatment - one saying it was a hygiene problem; another upon intimate exam 'I can't see anything' although I knew something was drastically wrong. I also have not one piece of paper from my file from the hospital... in those days we didn't ask for or get copies of reports etc. It was not until my return to the hospital for checkup that I even asked what size the tumour had been! To this day I have no idea what the treatment was etc etc etc.. this is wrong. The family doctors and specialist I saw have either moved away or retired... and by the time I was aware I could obtain copies of my file/s it was too late - except for my word I have nothing to prove I even had cancer! Now in the Province of Canada in which I live I can request copies of info from my family dr/nurse file; can request from local hospital copies of reports etc., and from another hospital in Toronto can get copies of reports from my file from my home without requesting it. Both local labs, one charges $10 a year and one is free, I can get copies on Intrnet of results of blood and urines tests but they have to be sent (not necessarily seen by) the ordering dr. Yes I have also found many errors regarding what I said or such and I have a copy of emerge report saying I did not have a small stroke when in fact six months later I discovered via another Dr. that I had, but took no action. My spouse is not at all interested in seeing any of his file/s, he does not read the accompanying information sheets from his 10 or so meds; that's his choice, but now after not seeing my files for dozens of years, I want to see EVERYTHING. Also very handy when I print out a report say from a private lab... the hospital has no access to this information! So if recent can show the dr at emerge or such the results, and vice versa.... it is so helpful and saves me having the same tests twice. Yes can be upsetting to read about things discovered in reports, but we will be advised about it ultimately.... one downfall is I now have a lot of paperwork and files and having many illnesses am finding myself a bit swamped with paperwork, but its worth it, to me. Years ago after xrays of kidney dr told me all ok; i found out year later had cyst; ok, not a huge deal, but why didn't he tell me; also had uterus punctured during d&c and surgeon said there were problems, hadn't I had symptoms, and he also took appendix out while fixing - again, didnt find out until a year later.... from another doctor; to me that was wrong and now that type of thing wont happen again! I would imagine some drs. are concerned about being sued, and I have had just cause to in the past, but I didn't and wouldn't - but please just tell me the truth..... sorry so long .. but also one of our office buildings had a fire and drs. patient files were lost... so if we had our own copies would have saved a lot of records that went up in smoke!

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I've found that keeping a typed,dated, running record of all doctor appointments, giving the doctor's name,why I went and what was the outcome to be very useful because at my age I can't remember everything. I also ask for a copy of every test, procedure etc. All of this is put into a binder which I bring to all my appoints. It also includes insurance information. Doctors in general really like it...good luck !

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@casey1329

Before you write off your doctor of 25 yrs. make sure that he got the messages you sent him. I say this because I was getting annoyed with a friend who hadn't answered my 2 emails asking if she wanted to see a show. When I finally ran into her I found out that she never saw the emails. She is more into texting and very rarely even looks at her emails.
However, a two week wait for blood work is unacceptable. Perhaps calling the office, everyday if need be, to ask for the results. Here again could be an honest mistake...good luck !

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@casey1329, @becsbuddy, @gingerw, @artscaping, and all...Thanks Casey, for your good advice. This is a problem with this office for years. I've mentioned, complained and been quite verbal through the years, but no improvement. Often can't reach a person for hours or days!
With the new system, the same company Mayo uses, I had high hopes for improvement. It is much better....but the staff stil is horribly slow to respond. They have still not responded to the iron test results that are very important.
I'll chat with him in person and see what happens.
I'm just not willing to allow this kind of stress cause continued issues. No more.
Be blessed.
Elizabeth

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My husband has lung cancer and we love getting the test results online from his CT scans. It's good to know as soon as possible what the actual situation is; whether it's good or bad. My husband's last full body scan showed a very small amount of growth of 2 nodules but there were many nodules that were unchanged which is good. Also there were 11 mentions of other parts of his body being "unremarkable." If it's "unremarkable" it can't be bad!

In other types of tests, early information helps you take steps to improve the problem. If you are low in a certain level such as Potassium, look up what foods have Potassium in them and eat more of them. Also when you come across a term like Creatinine; (What is that?) just go to the Mayo Clinic and look it up.

Patients need more information not less; especially when their doctors are very over worked these days and can't often see them for weeks or months.
PML

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@ellisaa

Any time I have seen something i simply messsge th md office thru the patient portal. I have always received a response within 24 hours, sometimes a next day phone call. Much better than waiting weeks for sn appointment

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Yes! I find the response is quicker when I use the portal rather than the phone.

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Any time I have seen something i simply messsge th md office thru the patient portal. I have always received a response within 24 hours, sometimes a next day phone call. Much better than waiting weeks for sn appointment

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@ess77

@becsbuddy, @artscaping, @gingerw, @larryh123, and all...

Well, my goodness. A great discussion about finally having access to our own bodies' information. Finally! I'm horrified at waiting weeks or longer to hear from your doctor with the results of testing, sometimes testing that may be life-changing. That's torture for many patients. And as I'm now experiencing, I had bloodwork done 2 weeks ago and still haven't gotten anything from my doctor that makes sense. Only a sentence from a nurse I don't know who obviously hadn't read my file nor even glanced at the messages I sent prior explaining some history with these issues. This is not my Mayo portal, but My Chart that's a new portal based on the Mayo design using the same company. Finally, they have a decent, working portal...but the offices must catch up with the system. The office staff isn't able to respond for some reason. So, I'm ready to go elsewhere for my PCP...

I'm actually considering a new primary care physician, even though I adore this doctor with whom I've worked for over 25 years because he's not responded to my direct questions re the test results on the portal. That isn't acceptable to me - I need answers.

You know, as a patient I spent decades attempting to get basic information and explanations about symptoms and tests. Decades trying to get doctors to hear me. Then, here came the Mayo Patient Portal and Connect! Wow! I was thrilled, and am still thrilled. No other system is so responsive, no other doctors are so open and responsive. I get many results by the time I get home after the testing.

You know, I've been on this health journey for so long, most of my life, and experienced some horrid doctors and poor systems. The change to Mayo was a huge breath of fresh air. In fact, I could begin breathing and living with less anxiety and stress. Mayo has saved my life and my sanity. I'm so thankful for the kindness and real caring exhibited by the Mayo staff and professionals in person and on the portal.

Yes, there is information available I don't understand, but I'm fully capable of researching responsibly, on legitimate sites, usually Mayo and Hopkins, Cleveland Clinic, and such. I'm getting good info and the doctor either via phone or the portal messaging talks with me and I better understand the discussion. After all, it's my body, my tests, and my decisions and now I am a vital part of the discussion. Finally!

May you all be blessed as you walk this health journey and become even more of your own advocate with a good understanding of your issues. Blessings. elizabety

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Before you write off your doctor of 25 yrs. make sure that he got the messages you sent him. I say this because I was getting annoyed with a friend who hadn't answered my 2 emails asking if she wanted to see a show. When I finally ran into her I found out that she never saw the emails. She is more into texting and very rarely even looks at her emails.
However, a two week wait for blood work is unacceptable. Perhaps calling the office, everyday if need be, to ask for the results. Here again could be an honest mistake...good luck !

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