Doctors not informing patients of test results

[poppy]

I had an MRI of orbits and brain a while back after repeatedly complaining to eye docs about throbbing eyeball pain which radiated to my head which I knew was nothing to do with my corneal pain.

Did the MRI. Was told by receptionist I wasn't allowed to be sent a copy of the report. Waited a while to see if I would be contacted by the doctor's staff about my test results (doctor had made it clear he couldn't do anything else for my eyes and the MRI was a precaution so he hadn't given me a further appointment at which I would be able to discuss the results).

So I decided to seek a copy of the report using my rights to access medical records which took a couple of months during which time my faxes were repeatedly "lost".

I now have the report. As I always suspected, it is now clear to me that patients must demand a copy of their test results or they will never be informed of the results unless they have something really serious wrong with them.

Despite being just a stupid patient, the report clearly indicates that I have some mild sinus issues, I am not "misinterpreting" things as the patronising lady said when explaining why I couldn't have my report. It seems like the problems are minor and harmless and I don't really think they are in any way related to my severe symptoms. But the fact is I took time off work unpaid to do this MRI, if I had been going through the private system I would have also paid maybe $1000 for this MRI, and I should be informed of any findings even minor ones! I do have mild nasal congestion type symptoms and would have appreciated knowing that they may be from a sinus issue.

There was a second issue noted on the report. This is what I have questions about. Therefore I have scheduled another appointment with the eye doc despite him telling me he couldn't do anything and will insist he answer my questions. I hope that others here can maybe provide some information so that I know what questions to ask. The MRI report (done with and without contrast) states that there is a small linear enhancement near the orbital apex which is probably vascular but they couldn't find a "definite lesion". The report then stated that a different more specific kind of MRI could be considered for further evaluation if my symptoms persisted.

I am certainly not jumping to any conclusions that there is anything serious wrong, but I feel I should have been informed of the results of my test. I shall be asking the doctor to explain if the further MRI suggested by the radiologist might be useful to diagnose what I strongly feel is pain that clearly originates from my EYE and includes throbbing pain of the eye ball and radiates to my head.

I am very angry that doctors can get away with not telling you abnormal test results just because they think they are minor and/or common or might not be anything serious. Having to spend months going through legal avenues just to find out your test results is ridiculous. I feel that doctor's don't want patients to see test results simply because they find it annoying and time consuming when patient's ask questions, especially if the patient has educated themselves about their illness (in public doctors say that patient's shouldn't have test results as they become "anxious", as opposed of course to never knowing the results or what is causing your symptoms which must make patients very happy and un-stressed)

As patients I think we need to demand a right to automatically get a copy of our test result particularly if we are paying privately. I no longer get blood tests done unless it is bulk billed as the doctor never informs me if my results are worse or better, so I see it as a waste of money. My GP doesn't even tell me what my blood pressure or pulse is unless I ask, he'll just say it's high. Patients kept in the dark is not a good thing especially if you are not assertive enough to insist.

[Guest]

We are never given our test results either.

Every year I go for my annual physical, my dr. orders bloodwork to check cholesterol, thyroid hormones and whatever else, but I never get to see the results. I know if nothing is wrong, it doesn't really matter... but purely for my own curiousity, I'd like to know what they say. Maybe someday I'll ask for them...

[NotADryEye]

All my doctors now give me my test results. I think there may have been a change in the laws in the State of Florida, maybe US. I'm not sure. But I get them now, copies of everything, without asking, including MRI on a CD and all bloodwork, mammograms, sonograms, biopsies, everything. I take all of these reports to all of my appointments with Dr. ******. He looks at everything. You'd be surprised what he looks at and asks me about. I feel extremely fortunate.

I keep all of these results in a folder along with every report from every doctor. It makes an enormous difference. You feel like you are in charge, maybe not in control, but at least in charge.

Doctors have been open about the fact that they did not want to give out the results of tests to patients because they claimed they did not want patients to worry or misinterpret the information. Doctors have been less willing to admit that by holding on to the reports they also hold on to power and are able to control the situation, the patient, etc.

If you can get them, start to collect copies of the reports. And educate yourself about what the numbers mean. It's your body, after all. Why shouldn't you be able to read all the reports about it?

[Almondiyz]

I'm a patient at Duke University Medical Center, Durham, North Carolina, USA. All patients have online access to all medical tests, labs, & results. There is even a section where the physician is able to type a note, such as explaining the results, follow-up, ect. There is also a graph for following your labs, vital signs to see variations/fluctuations/changes with every visit. Duke notifies patients via email to check for test results, notes from physician to patient, & appointments. We are able to schedule/reschedule/cancel online. Payments can also be done online. Express check-in is available as well by paying your health insurance co-payment. This is only with Duke Medical. I have outside physicians that guard medical records like gold. I have no idea why, here it is our legal right to have complete access to our entire medical chart, doctor's notes as well, so they never write anything negative about their patients! Maybe share the info about Duke University Medical Center/Hospital to get other places to begin something like Duke Online Health. Hope this helps.