As an empowered patient, I keep track of all tests and results. I recommend to others that they do the same. If you get blood tests done, request copies. If you have an MRI, get copies of the radiologist's report and a computer disc of all pictures. These are just the beginning of taking care of your health. The next step is understanding what is found in these test results.
In my area, getting copies of MRI results is super easy. The MRI technician asks you to wait a moment when the tests are done. You wait for 5 minutes or so and a CD is brought to you with the images taken during the test and the software needed to view the images. You are expected to keep this CD for your records and to take it with you to your next neurologist visit. In a couple of days, you can walk up to the front desk of the same MRI center and request a copy of the radiologist report. (You probably can probably call to get a copy mailed to you, but this is faster in my case.)
Ever since I started on this journey of living with chronic illness, I've learned the importance of tracking something as simple as your blood test results. It was from copies of previous blood tests dating back to the very beginning of early RA symptoms in my hands (when things were still very vague and I knew that 'something just isn't right') that my rheumatologist informed me that my undiagnosed RA had dated back a few years. My primary doctor didn't recognize the very subtle pattern found in those blood tests.
When I get first diagnosed with MS, it was easy to get copies of blood tests. All I had to do was ask that a copy be sent to me when I was at the local lab for the blood draw. I would always get a copy in about a week.
A couple of years ago was the first time that the technician at the local Quest lab would not add my to the list of recipients for the tests. She eventually did call my rheumy's office which was in the same building to ask if she (my doctor) gave permission for me (the patient) to get copies of the tests. Something had changed in the state of Virginia. Patients no longer could have easy access to records.
So since that one trip to the lab, I made sure to ask my rheumatologist to add me on the courtesy copy list which always includes my neurologist and primary care doctor. Sharing test results between doctors helps to cut down on the number of blood draws I undergo during the year and it keeps everybody in the loop.
Requesting this addition to the standing order I get twice a year for routine blood work takes an extra moment during the appointment and takes a tiny bit of my attention away from other things which might be important to discuss. But that is one cost of staying empowered.
A few weeks ago, I had a neurology appointment. It was time for routine blood tests and my standing order had expired. So my nurse practitioner wrote an order which would cover her interests and those of my rheumy. She listed those other doctors as recipients of the results. She also indicated on the order that I (the patient) should also receive a copy.
The neurology clinic is so forward thinking that they had added a statement and box which could be marked to indicate that records be sent to the patient. My nurse practitioner not only put an X in the box, she circled the entire statement so that it would not be missed at the lab when the order was actually processed.
That same week I met with a new doctor, a cardiologist. This doctor had a couple of other tests which she would like to have. So she added her additional requests to the order and added her name to the list of recipients. This was not a problem, but now there are four doctors to receive the results in addition to me, the patient.
My follow-up appointment with the cardiologist is Wednesday. I have been having irregular heartbeats and wore a Holter monitor for a day to record my heart activity. The answer to the irregular heartbeats could be something as simple as a magnesium deficiency. I would know if this were likely, IF I had received my test results.
But...I will be going into this appointment without knowing the test results. Quest did not send me a copy. I am not happy about that.
I called Quest to find out if there had been a problem processing my results. What I found out really makes me angry. Apparently as the technician was adding doctors to receive results (and she had already added me first as I insisted), I (the patient) was bumped off the list. There is only room on the request form for three additional recipients for the records.
Only room for three. That was the first problem. The next problem is that I was told in the state of Virginia that the request for copies to the patient must be hand-written on the order. Pre-typed statements on the order form are not accepted. That is ridiculous in my book. If my doctor wants to make it easier for the patient to be empowered and save time during the office visit when filling out orders, why can't it be accepted?
At the risk of sounding calm about it, I was not a happy camper when I was told this tidbit of information. My neuro's order forms are geared toward efficiency and effectiveness of use. My rheumy's order forms are not equally up-to-date with the latest philosophy in participatory medicine.
But the rheumatologist's orders are accepted when she cc's the patient. My neurologist's orders are not accepted. There is something wrong with this picture. It's like a step backward and "regulations" are putting up unnecessary barriers to information.
So what's the solution? For me, I will have to ask the cardiologist's office to print me a copy of the blood test results. I don't think that it should be a problem (I hope) especially since as my first appointment, I brought my spreadsheet of all my blood test results dating back to 2003.
I keep this spreadsheet updated in my computer every 2-3 three months. I can see trends which correlate to different changes in health, both temporary and permanent. I can see that Tamiflu caused my liver enzymes to shoot up through the roof but that methotrexate does not. I can see how different lymphocytes are affected during an MS exacerbation. Basically I can spot when things start to look unusual.
But according to the state of Virginia, I should not have access to my records unless: 1) my doctor gives permission, and 2) my doctor HAND WRITES the permission on the lab order.
HAND WRITES the request. How silly is that?