The Patient Portal—Help or Hindrance?

I am glad we have patient portals with access to our records. My career was in the medical field, so I always requested copies of my labs, reports, surgical notes, & kept files. It is our responsibility to advocate for ourselves. I don’t however, think it is good that our reports drop before our physicians have a chance to review them. This leads to a lot of misinformation. The web does not always provide an accurate answer, as getting an accurate answer often requires more knowledge than we have. Also, it seems that the expectation is that your doctor is on call to you. No physicians will stay in the field if they have to be on call to each of their patients, that is an unrealistic expectation. As I read people’s questions about results they have read, (before they talk to their doctor), it’s clear that there are so many misunderstandings, & so much anxiety, due to medical terminology being it’s own language (just as terminology for other professions ~law, scientific, psychiatric~to name a few). The answer to “what does ______ mean” has been “bright, which is normal”… there will always be differential diagnosis in reports, because we live in a litigious country, the wording often tells the professional that it is highly unlikely. The patient never reads that as an option. While we do “pay for these tests” & are “entitled to the results” these egocentric attitudes negatively impact our care. There has to be something in between. I’m sure this will not be a popular opinion. I decided to share it, because it’s not really a discussion if everyone is saying only the popular opinion.

I personally like to read reports before I talk to the doctor because I want to have time to digest everything and have my questions ready. There is nothing more frustrating to me than to have the doctor just read and discuss the impressions section, then give me a copy of the report so when I get home and read the details I'm left with questions. It may be a long time before I see that doctor again.

Sometimes there are incidental findings in a CT or other scan, but my specialist doesn't mention them if they are not related to the condition that doctor is treating me for. I find a lot of specialists have tunnel vision and only care about (or are knowledgeable about) their little piece of the puzzle. Or they may not want to bring up incidental findings because they don't want to take the time. If I ask questions, they can either explain it's something common (like liver cysts) or refer me to another specialist if there is a concern.

I do think it really depends on your personality. I like details. I'm pretty medically savvy especially about my own conditions. If I don't understand something, I research it so I can have an intelligent discussion with my doctor. If you're unfamiliar with the medical terms, you're less likely to understand and remember what the doctor tells you.

Some people don't like to know details and just want to be told what to do next. That's not me. I want to be sure everything makes sense. I believe you need to be informed in order to be your own best advocate. People that don't want to know the details are not likely to use the portal anyway.

Typically, when I read a report that has posted, I'm going to be seeing the doctor in a day or two to discuss it anyway so any misconceptions on my part will be cleared up soon. When we have to wait too long for a report, we can start to imagine the worst. Anticipation can be worse than reality. To me, there are more pros than cons to reading the report in advance of the visit.

You raise very valid points and I’ve always believed that patients have to have the respect and discipline to adhere to what the doctor told them their process of communicating results are, including timing. Some doctors now say “they’ll be on your portal, and you’ll hear from me only if anything’s out if the ordinary “. It’s tough if you have to wait 6 months until the next appointment in that case if confused at jargon or numbers, but hopefully the message system in a portal works for questions that gnaw on someone. If a person can’t respect the doctor’s process, perhaps the portal isn’t for them and they should insist up front to be contacted personally when the results come in, good or bad. I am a complicated patient with a lot of monitoring- doctors rarely leave me notes or interpretations of my frequent routine labs and scans. I’m on my own after reading them myself and waiting for next 6 month appointments with them when the repeat tests are due. I have to trust I’ll hear from them sooner if needed.
But things happen. I was in a university hospital, in 2019, had a bad reaction to a med they gave, and they did CT Scan on neck/head; while in there they joyfully reported to us that I did not have a stroke. It was 8 months later that I asked for a copy of that CT report as I was moving to a new state and was collecting medical records. The No-stroke report said there was an abnormal growth in my neck that needed correlation with ultrasound and biopsy. I had to accidentally find this 8 months later?
So mistakes and miscommunication or “well, our department was only looking for a stroke” happen. They didn’t even send that scan to my PCP back then. So at least I found it, followed up with those tests and of course it was cancer; I’ve been treated and now in the lifetime of monitoring, but hey, cancer is sooo much about early detection and that ball was dropped. The jargon in that scan was simple and didn’t need googling. I think these mistakes are rare, but what’s wrong now with the extra preventative measure of having patients read their reports, especially since they’re the major stockholder in them? It can only be a win-win in helping each other catch oversights. Most portal questions go through admins, not to the doctors directly until screened and deemed to need his response. I know the admins are busy too, but sometimes patients have very valid reasons to need understanding of the reports and can’t wait another 6 months for their 10 minute visit with them. But if the doctor up front said give him/her a week for results, then we must be forced to hold our reactions and questions of the results we receive in advance until then.

I agree with you in needing to be prepared with questions in advance, as their time is just so limited in today’s medical business model and we must make the most of those minutes with them.
It’s that business that forces our specialists into what you call “tunnel vision”, and we’re the ones, if able enough, trying to connect the dots across our whole medical picture and put the jigsaw puzzle together. We need each and everyone one of them, but we’re the centerpiece with hopefully a good PCP helping manage our total care. I’ve had well meaning specialists prescribe medicine or change doses of one, and it’s on me to ask my cardiologist or GI doc if it’s ok, and several times I could have negatively impacted another issue. So I agree it’s on us to help steer the ship and add some advocacy in our total team approach in managing our care, which makes timely access to reports crucial to having any needed and timely conversations with doctors during appointments.

I've found that my cardiologist doesn't even read my chart let alone read test results that don't directly deal with his care. I was going for a procedure that required I stop aspirin a week before it. Dr. says ok but when I asked about stopping the ace inhibitor and beta blocker as well he looked puzzled reviewed my chart and said that I can not stop any of the medications as they are necessary for my heart's health. Point is when he told me that I could stop the aspirin he wasn't aware that I had had a heart attack and had 4 stents. So not only do we have to read all the test results we have to make sure the doctor is aware of our medical issues when we go for our appointment.

@californiazebra, @dbeshears1, @amyb5 and all...You are all so on target. I love the Mayo portal. I've used it since beginning this Mayo journey. It provides me with prompt, timely, and generally helpful information I use to better understand my personal health. I was thrilled when I first went on the Mayo portal, as I've had horrible experiences with other medical offices/facilities and their attempts at a patient portal. Most were/are extremely frustrating and difficult to maneuver and are rarely used well by the medical staff. My PCP is with a large medical center in my city and now, just in the last months, have they developed something usable.

I'm not sure I love the new Mayo changes, but I'll adjust. I prefer the older version, but am learning to deal. I had a nuclear body scan this week and read the results yesterday. So many questions about the reading, but see the ordering doctor in July. I sent a portal message to her staff requesting clarification and called her admin to request her help for me to understand the results. She will contact me and explain what I read so I'll be informed and a happy girl.
This is the way I use it in addition to doing my own research following tests. I am my own and only advocate as learned through decades of poor medical communication and care. I'm very focused on knowledge. I want to know what's happening and why and what we can do to improve my situation, and my daily life. Mayo Clinic works well with this kind of patient, generally. The doctors I visit seem to appreciate my interest and questions, work with me openly and make joint decisions about my care. This is what I've fought for most of my life, since a young woman. I'm now 76 and my health is better in many ways than a decade ago. Because I see only Mayo doctors now other than the PCP-Mayo PCP don't accept Medicare so I'm not able to see them-I get better care, more insight into what and why, leading to better treatment.

I'm grateful for the Mayo system. I use the portal which provides positive guidance for me.
Blessings all, Elizabeth

I like your attitude! We have to want quality of life and do our part to help improve it. I can almost understand a doctor being frustrated with a patient who’s not trying to help themselves, and find they are the best partners with us when we’re willing to work hard and make smart health choices / then it’s s true win/win and they have victories they can share with us.

@casey1329

I agree that we need to be our own quality assurance expert. Doctors ask about medication allergies, I give them to them, and I can't tell you how many times they prescribe exactly what I'm allergic to or something chemically related. Not all doctors know their chemistry or look at their chart. Always look for contraindications if you have med allergies and check with the pharmacist regarding allergies and interactions before taking new meds.

In yesteryear, a lot of doctors resented a patient that was well informed as if threatened by it. But in today's world with so much information readily available to us (just use credible sources), I think doctors expect patients to become informed about their own conditions. The doctor has to do less explaining and isn't looking at a patient with a blank stare.

Also, no one has more time to dedicate to researching my health conditions than I do. A doctor's time is limited so help them out by asking informed questions.

I haven’t helped my care management a lot by moving 2 times in 4 years and having to change all of my doctors each time. Seems doctors read last report and just carry on without doing their own assessment. Occasionally one treats you like a brand new patient.
I have been in SC for a few months now and my first labs just came back with my LDL at 133, High vs 100 ideal, but I am pleased it has maintained & improved gradually from ~160 it was 4 years ago when the statin I was on was stopped. I most definitely have been watching my cholesterol. My PCP I had 4 years ago stopped the lowest dose statin because my liver enzymes increased significantly and she didn’t like the uncertainty of statin/Neuropathy link.
Yesterday morning I had a message from my mail order pharmacy that a prescription for that same low dose statin that was stopped 4 years ago is on its way. I later got a portal message from my new PCP saying “ Hi, your cholesterol (210 total, HDL and triglycerides fine) is higher than ideal, and I think it’s better for heart health to try a statin to lower it, so I’ve called in a prescription for you to try and we’ll monitor it”. I have never had a blockage and don’t have high BP, and my cardiologists have been ok with my 240 (now 210) total cholesterol.
It’s not her fault I have moved, and I like her so far, but I have history that needs to be reviewed, and portals help me gather the relevant data and notes to make sure she has what she needs to maybe reconsider her decision. Does she really want to repeat an identical statin experiment from 4 years ago to see if we get different results, at the expense of liver enzymes getting abnormal again and possibly hurting my PN?
I have an appointment with my new cardiologist next month to get care established and of course will use my orientation time to ask his opinion of my heart health and statin. I most certainly will not take a pill before then. I am afraid to go through that experience again but want to respect my new doctors thoughts on my care. In the meantime, the statin is in the mail and I have a message into my new PCP to just absolutely make sure she understands the thinking that went into my old doctor stopping that statin 4 years ago and why my doctors since then decided to keep me off statins as well.
The point is as you’ve made - we have to be on our toes, research & advocate for ourselves, or at least keep up with our own history, which the portals help us do. An egotistical doctor might be angry at my questions, but I have to believe most doctors would be appreciative that I have a need to understand their thoughts on balancing my health risks. If only things were so simple that what might help one issue a little didn’t come at the risk of further handicapping you or diminishing the function of another vital organ…