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This blog post was inspired by the discussion that member and volunteer mentor, Becky (@becsbuddy), started of the same name The Patient Portal—Help or Hindrance? It's such a good title, we used it too.
The 21st Century Cures Act
It is crazy to think how far we have come with technology and the enormous access we have to information. Patient Portals allows us access to our own health information and the ability to check lab, x-ray, or diagnostic test results in real time, often before our doctor can review the information. Since 1970 patients have had the right to request and view their entire medical record. The 21st Century Cures Act (Cures Act) initially passed in 2016 and additional conditions of the act set guidelines for the release of electronic health information immediately to patients. The intention was to make clinical information more readily available to patients by removing barriers and delays that existed with traditional means of requesting medical records. The Department 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.
Having instant access to lab, CT scan or diagnostic tests before the doctor receives this information can result in a life-altering diagnosis, confusion, and worry. Personally, I have consulted “Doctor Google” several times to try to understand the results of a test I found in my electronic medical record. This resulted in a rabbit hole of inaccurate information. My hope is to provide helpful information or potential advice on what you can do to relieve stress and worry when it comes to accessing test results.
A survey conducted in partnership with the American Medical Association and a patient-owned cooperative found patients want their information readily accessible, but in certain cases, debilitation, life-limiting, or a terminal illness they wanted to speak with their physician.
Communication is key
If you are undergoing a medical test, ask your provider what the possible results might be, and what each would mean. It is important to know what the expectation is for timing- both expectations around when results will be in your electronic medical record and when you can expect to hear back from the doctor’s office. Also, be sure to ask how you will hear about the test results from your doctor, will they call, schedule a follow up appointment, and when will this happen. Knowing this information can ease emotional distress.
Ultimately, it’s your decision.
Every person is different on how they want to receive information. If you know you would appreciate having a connection with your physician before seeing test results one tip would be to turn off Patient Portal notifications for test results. You can always turn the notifications back on. For others, they may want to know results right away, even if results may be potentially life changing. Knowing information ahead of time gives them an opportunity to be better informed, process the information, and make a list of questions to ask at a follow-up visit. You know yourself best and should decide what works for you in your situation. Most importantly, do not make assumptions until you have the opportunity to discuss them with your physician.
Read experiences of fellow members, portal challenges and helpful tips. Add your story and tips to the growing conversation here: The Patient Portal—Help or Hindrance?
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I'm so glad we have patient portals. I have two as my GP practices in one health system and my oncologist in another. They are different in the amount of information made available. Appointments are very helpful as well as the list of drugs and supplements I take. Test results I do look at so I am prepared with questions when talking to the doctor or nurse. One portal seems to be more closely monitored when I send a question through it. The same one also provides the doctor's notes which is very helpful when you may not remember everything that was discussed during that visit including things not said aloud. For example, an oncologist at the same facility I saw for 6 months during a clinical trial described my demeanor and noted I was "well groomed"). I guessed this was evidence of my mental state. In the other health system's portal I was once (I think accidentally) given access to a former oncologist's notes-he actually treated me during chemo but not currently. I had problems with prolonged incidents of my heart racing within an almost predictable period after every infusion. I was supposed to have Taxol for 12 weeks (after 4 rounds of A/C), but the racing heart scared me so much that I told my doctor I was quitting Taxol after 6 weeks. Voices were raised and he swore to me the chemo was not causing the issue. Not being a quitter I agreed to finish. No more incidents for 4 weeks, but it happened again the last two. An infusion nurse told me it was a side effect of one of the drugs, and my current oncologist told me it was the steroids in the infusion mix. The notes I "accidentally " saw diagnosed it as panic attacks which diagnosis was never disclosed to me. The doctor lied. And lied. I found a new oncologist. So, yes, I'm grateful for patient portals.
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5 ReactionsI am sorry for the experience that you described above. I am glad you listened to your body and took the necessary steps needed to feel better. I'm curious what you mean when you say that you "accidentally" saw notes in your patient portal?
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2 ReactionsI "accidentally" saw those notes, I guess, because after a short period of time the notes (or any notes) were no longer visible. To be clear, one health system provides a visit summary and also the physician's own notes. The other facility only makes visible the visit summary. I had access for a short time to notes for just a few visits which notes eventually disappeared.
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1 Reaction@dlmdinia, I have a similar experience with my local health facility. The records are visible to me for 60 days before "disappearing" from my view. When I inquired to the records department, I was told that I could come in inperson and request/sign for my records. Definitely not convenient. 🙁
However, on my Mayo Patient Portal, I can access my records and read reports and results anytime! 😊
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3 ReactionsI find the Patient Portal extremely valuable.
I like being able to tract and compare lab results from the current to the past.
I like being able to message the health care teams who are so great about getting back to me.
I like being able to check appointment times and locations and whick provider we will be seeing
I think its great to be able to answer the questionnaires ahead of visit to save time checking in.
I also find it benificial to be able to link the different health organizations that we have to deal with.
I like being able to go back and review the Doctors' notes about the visit and/or special instructions or suggestions.
We live 6 hours away and I feel comforted by knowing I have this direct link to care whick Mayo is unbelievably good at providing.
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