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.

@dbeshears1

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…

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HI Debbie @dbeshears1

I just had my endocrinologist tell me I needed to be on a statin because my cholesterol is too high, but not outrageous in my opinion. I asked about statins and neuropathy (I already have) and he said there was a concern so he prescribed a weaker alternative. What if I hadn't asked? And this doctor really reviews my case. Hmmm. My neuropathy couldn't handle metformin either so a weaker med was prescribed. Both can cause severe stomach upset and that's a huge quality of life issue in my opinion so I've decided against taking either. I will just do what I can improving diet and exercise and hope for the best. I'm already on 3 cancer meds causing a lot of side effects including diabetes so I think I'll just live with the rest. You take one med then need to take more meds to deal with the side effects from the first med. It's a domino effect that I have to say no to sometimes.

With meds, you also have to watch out for pharmacies that just keep calling the doctor for refills and the doctor rubber stamps them without ever calling you back in. Again, be your own advocate there.

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@californiazebra

HI Debbie @dbeshears1

I just had my endocrinologist tell me I needed to be on a statin because my cholesterol is too high, but not outrageous in my opinion. I asked about statins and neuropathy (I already have) and he said there was a concern so he prescribed a weaker alternative. What if I hadn't asked? And this doctor really reviews my case. Hmmm. My neuropathy couldn't handle metformin either so a weaker med was prescribed. Both can cause severe stomach upset and that's a huge quality of life issue in my opinion so I've decided against taking either. I will just do what I can improving diet and exercise and hope for the best. I'm already on 3 cancer meds causing a lot of side effects including diabetes so I think I'll just live with the rest. You take one med then need to take more meds to deal with the side effects from the first med. It's a domino effect that I have to say no to sometimes.

With meds, you also have to watch out for pharmacies that just keep calling the doctor for refills and the doctor rubber stamps them without ever calling you back in. Again, be your own advocate there.

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Right on, one has to be sure doctors are aware of clinical issues. Always read MyChart. I have caught serious discrepancies in Notes. And one should read test results!

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I keep a binder of all my test results plus running record of all my appointments, the reason for going and the results of the visit. Most doctors like it and say things like, "I've made their job easier". So good luck with advocating for yourself. It's the only way to go in our busy high tech age. As far as taking a statin, I think there are several types and you might just need to find the one that works for you...good luck!

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I really appreciate being able to access test results as soon as possible. It helps prepare me for my appointment with my doctor.

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I’m new to the Mayo Clinic. The patient portal seems difficult to navigate….I can’t seem to find a way to contact all members of my care team, only my medallion doctor. What am I missing? TIA

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@buckwild

I’m new to the Mayo Clinic. The patient portal seems difficult to navigate….I can’t seem to find a way to contact all members of my care team, only my medallion doctor. What am I missing? TIA

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Welcome @buckwild, I have used the patient portal for quite a few years now and have never seen or needed an option to contact all members of my care team. Normally I just contact my primary care doctor using the Send message function. I'm a patient through Rochester Mayo but it sounds like you have healthcare through the Mayo Clinic Medallion Program in Arizona or Florida. I don't think it's available in Rochester.

--- Mayo Clinic Medallion Program: https://www.mayoclinic.org/departments-centers/mayo-clinic-medallion/sections/overview/ovc-20462968

Can you send a message to your medallion doctor and ask them to also send it to all members of your care team?

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@johnbishop

Welcome @buckwild, I have used the patient portal for quite a few years now and have never seen or needed an option to contact all members of my care team. Normally I just contact my primary care doctor using the Send message function. I'm a patient through Rochester Mayo but it sounds like you have healthcare through the Mayo Clinic Medallion Program in Arizona or Florida. I don't think it's available in Rochester.

--- Mayo Clinic Medallion Program: https://www.mayoclinic.org/departments-centers/mayo-clinic-medallion/sections/overview/ovc-20462968

Can you send a message to your medallion doctor and ask them to also send it to all members of your care team?

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Interesting comment John. I lived in Florida 10 years until 2010. In Florida many Internal Medicine doctors were starting to go "Concierge" - which meant you had to pay to be in their "network". So, Concierge doctors would be outside any Advantage Plans. I have traditional Medicare with good Medigap policy so I can self-refer to any doctor who takes Medicare, and I never see a bill. Adding Concierge doctor fee increases everybody's cost, not everyone can afford it.
I am back in Minnesota now and am patient of Mayo Rochester for lung cancer, cardiac stent, and now need other health issues addressed at Mayo. It is important for me to now stay with specialists at Mayo because they need to consider my whole clinical picture when making treatment decisions, and Mayo lab already has lab work on me which could be improtant.
I cannot have a Primary care physician at Mayo Rochester because one needs to be in a certain geographical area. Otherwise, the people living close to Rochester would not be able to get in to see their closest PCPs. So, for the same reason I suspect a Medallion program would interfere with the care of people living in the rural areas around Rochester.
I am less than 2 hours' drive from Rochester, and we do have snow so driving to Mayo for Urgent/Emergency Care or normal PCP stuff is not really practical. I work with my local PCP for standard stuff, and to review tests done at Mayo and discuss anything popping up that is outside my specialist's area of expertise, but that might be a concern. I want to be able myself to go directly to the Specialist for questions on the relevant issues and not through a PCP.

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@buckwild

I’m new to the Mayo Clinic. The patient portal seems difficult to navigate….I can’t seem to find a way to contact all members of my care team, only my medallion doctor. What am I missing? TIA

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Hi @buckwild, I'd like to add my welcome. I think you're wise to get tips on using the Mayo Clinic portal from fellow members here. @johnbishop has given a few tips that may help.

You may also be interested in this related discussion specifically about the Mayo Clinic patient portal:
- Mayo Clinic Patient Portal: How do I find it? Do you use it?
https://connect.mayoclinic.org/discussion/mayo-portal/
If you'd like to contact someone for support in using Mayo's portal, you can click "Get Help" in Support on the portal. Here's the link to call or submit an online request:
“Get Help” https://onlineservices.mayoclinic.org/patientportal/content/get-help

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@seabright2001

I really appreciate being able to access test results as soon as possible. It helps prepare me for my appointment with my doctor.

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You can contact your primary physician on the portal through messages. Otherwise, I think you need to call the clinic to contact other members of your care team.

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In todays world, having the portal is important. Saw what one doctor wrote which was totally incorrect! His 6 min speech that it was my meds giving me pain was a laugh. It turned out my attorney got involved and this doctor, which I waited 6 months to see, found out quickly how incompetent he was.

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