The Patient Portal—Help or Hindrance?
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?
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This has not harmed me, but I have spent a fair amount of time doing partial translations to family and friends. I got this call from my neighbor just this morning, “what does this word mean” she had a large mass removed and the biopsy results were posted a week before her phone appointment with the doctor. I went over and translated without any advisement. Lucky for me it wasn’t a cancerous mass, but this would have caused this poor woman agony for a week. There will still probably be some form of management in her future, but peace of mind can be had. The good thing is that there were other comments by the doctor that she can ask about should her doctor forget to address them, doctors are as human as the rest of us.
This is a double edged sword, and maybe the foreseeable results to a very technological society.
While having information readily available can be a blessing, it also has to come with a caveat. I would really hope that my medical team is addressing the whole issue, not just words on a page that is the lab/procedure results. For me, putting everything together into a comprehensive result is paramount. Picking out only certain words or phrases can lead to panic, or anxiety, and it's easy to focus only on that bit. The entire picture needs to be seen through the lens of the individual patient.
I am glad to have results to review and print out prior to appointments, when that happens. It helps me feel more like "part of the team" of my care.
I fully understand why seeing a lab or imaging result out of context can be scary. I would suggest, upon getting a notification that you have a new test result, that you don't open the message but instead send a message via the portal to your caregivers, asking them to review the result and contact you. I, personally, want to know the result ASAP so I can then ask my healthcare provider questions regarding the implications.
A recent article in the NY Times surveyed persons about their feelings regarding getting test results immediately. About one-half felt it was a great benefit and prevented censoring of information. Another one-half felt uneasy about seeing results without interpretations by their healthcare providers. Obviously a mixed blessing.
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.
@piedpiper I totally agree with you about not looking at test results until you have contacted the doctor. The article you referred to was excellent. If you have the link to the article, put here so others can read it, please. Another helpful tip is to ask the doctor when they are going to review the test so you can expect a call.
It's definitely a great help, I feel like I have some ownership over my information. I can send a message to my doctor if I need to, and put in for refills. It actually helps me to be more prepared and not caught off guard so I can ask the right questions but yes take the results with a grain of salt until you see your doctor.
Good evening all. I can't believe I opened my screen to these posts. Here is why…….. the last two days have been about tests for a new symptom I have. My life partner and I have spent the last two hours with a second device set to a medical dictionary. We had to look up words and phrases on one device and hope our knowledge would somehow translate to an understanding of what might be going on at this time.
One of the doctors seemed almost excited about the fact that his share of the testing would be on the portal within an hour to demonstrate how quickly the computers could spit out the analysis. I would have gladly stayed to hear him explain all the terminology and translate it into a diagnosis for us. So you are so right….don't get overly anxious until you have someone who can relate the results in your "need to know" language.
I like having immediate access to medical tests. I use the computer to help me understand difficult words and yes there can be misunderstandings. However, overall it makes me more prepared to have an informed discussion when I meet with the doctor. I also enjoy the "After Visit Notes" as it allows me to read what the doctor thinks my problem is and what he recommends as a treatment. Sometimes I find errors. The doctor may have written one thing where as I said something else. Usually, they are minor points. It's interesting that you say "Patient Portals" are required because I find not all doctors have them. These are the doctors I generally avoid.
Ys- what you are saying about seeing test results and even comments in. A visit summary that raise an eyebrow can make one anxious.
I would remind everyone that your doc is a part of your healhcaree team – which you are also a part of. As such – another great feature of he portal is the messaging.
When I have a question or concern I always send a message to my doc.
You can then ask questions about your concerns.
Maybe I am lucky – but i have 4 docs at mayo and all are pretty responsive to the portal messaging. You might have to give it a day or maybe 2.
If you have a concern that you want to actually want to speak to someone about – you can ask for a call back.
I’ve ben with 2 o my docs for over 10 years – no sure if that has anything to do with it – but I normally get a callback the next day. Sometimes I will get a call from one of them asking what my questions were. You might have to be a little like the squeaky wheel – but keep asking – you shouldn't have to wait long.
So yes the test results can be a double edged sword – there are other tools in the portal that I feel are there to help with these issues so you aren't left with test results and google.
Use them asa total package. Dont feel you are left to be a radiologist or need a medical terminology degree to be in the loop with your healthcare. The portal gives visibility. You and the doc give it substance.
I’m not sure what other portals you have utilized from other heath providers – I can say that my experience with the mayo portal to be top notch. Been using it for several years – at least 4.
Sorry to be long winded – I was having some issues and when seeing several specialists and they all have access to the same info – but sometimes look at their area of expertise and may not see other clues that might or might not be of value.
In my case I was tracking some bloodwork. I noted that one level was consistently 3-4x the normal value. I had to bring that up and question it. My questioning led to a test and genetic counseling to verify I had another degenerative disease.
Because of the portal I was able to show the doc the other pieces of the puzzle. The communication via the portal was a great tool.
Use the portal to get conversations started – many times from test results. Use your healthcare team for answers.
It's a great help. Is there room for a few improvements, of course, always will be. For me, we have "My Chart" and I love it!