Monday, November 26, 2012

Day 26: “I want to change THIS about healthcare...”

Two words.

electronic records

Do you know how much hassle and upset would be avoided if all medical records were electronic and were transferable from hospital to hospital? I know this is something that the medical profession is working towards, and that there are issues with privacy. However, I feel like the rest of the world has caught on to the e-trend already and the medical profession has fallen a little behind.

Throughout my journey with endometriosis, I have had to explain my symptoms, treatments and extent of my endometriosis countless times to different doctors. I had to move between doctors as with each one I hit a brick wall where they couldn't help me anymore. I have also moved states - from South Australia to the ACT. Having to remember every single detail of your condition every time you see a new doctor, so that they can give you the best care possible, is a lot of pressure to put a patient under. It's easy to forget things in a short visit, even when you have a designated folder or prepared list. It can also be quite upsetting to have to recount every bad experience every time you see a new doctor.

The worst of these times was when I was about to go in for surgery to see if I had endometriosis or not.

My surgeon was not who I thought it would be (not my regular gynecologist) and apparently had no idea of my history. All he had was a few short notes on what had been requested to be done. Laparoscopy (to see if I had endometriosis), diathermy (to treat it if I did have it) and nerve ablation. My gynecologist had also chucked in something about putting dye in my fallopian tubes to see if there was scarring and to give me a better indication of my fertility.

He saw the dye request, saw my age and marital status, and automatically questioned it. He didn't understand why I would need to have that done at my age when I was single and not planning on having children in the immediate future. My gynecologist had actually suggested it to put my mind at ease, and I figured, if they are going in anyway, they might as well!

This surgeon, however, didn't see the point, and so he made me feel embarrassed about it (pretty much the last thing you want to feel when you haven't eaten or drank in 16 hours or so, and are about to find out whether or not you have a chronic condition through your first surgery) and he ended up not doing it.

During this same conversation, I outlined my symptoms to the surgeon. He asked if I had tried the pill, and said it was "probably just PMS", again not the words you want to hear when you are hungry, thirsty, scared and emotional, and have already gone through all of this a million times to actually get to the stage of surgery.

Context is important. If the surgeon had had my medical file, with a list of all the symptoms I had ever reported, all the doctors I had seen, and all the treatments that I had tried (and had failed), maybe he would not have questioned me. Maybe one of the doctors would have figured out that it was endometriosis earlier if they had seen the number of doctors I'd been to, the different pills I had tried, and the ultrasounds I had had on an official document, and not just from my mouth.

When I was coming out from under my anaesthetic, the surgeon explained to me the severity of my condition (stage III) and where it was in my body. I don't remember much since I was pretty drugged up, but they handed me an envelope with the surgical notes in it - the only record that I have access to with details of my condition. This kind of information would be perfect to send over email (it could be an opt-in thing, if people are worried about privacy), so that the patient has a copy that they can access no matter where they are.

Patients in other places - do you have electronic records in your healthcare system? Healthcare workers - do you see any problems with this scheme?

In the future, all doctors will be this excited to use electronic health records.

This month I will be taking part in National Health Blog Post Month. Check back every day to see the new topic and learn more about endometriosis. Today's topic is about something you would like to change about healthcare.


  1. I have often wondered why they don't have electronic records- seems so much easier.

    As for the fertility thing, this drives me nuts. As a 16yo I questioned my doctor and asked for some tests to be done. She said not to worry about it until I was ready to try for kids. This drives me nuts as, if I know it is going to take me a while to have kids, I will start earlier. To this day, even as a married woman, I do not know and am too embarrassed to ask for tests to be done when I am not planning on kids atm. Married, single, young or old, surely this is information you should be able to find out, even if it is just to put your mind at ease? Crazy ;s

    1. Isn't it ridiculous? And then women get criticised for putting their career first only to find out at 35 that they can't have kids. Not that fertility tests are foolproof, but I think it would be good for women to know in advance whether or not conceiving may be difficult for them so they can plan their life accordingly... maybe start trying for kids a bit before they had planned on doing it before.

  2. All of my doctors' offices have electronic records, but I opted out. I also have visited many specialists for my endometriosis. The reason I opted out is because some of the doctors I went to were terrible. One kept writing down the wrong symptoms and claimed that I **had** to be having them (I don't bleed heavily, but he was insisting that all girls with endo bleed excessively). He also added other symptoms I did not have, and he mixed me up with his IVF patients a lot (I never had IVF but he claimed I did because he noted it in his records. Ah!). He wrote I was difficult basically because I dared to correct him. If a doctor writes something wrong or offensive in your electronic records and other doctors read it you'll have a difficult time getting it cleared up. And sometimes you can' get it cleared up so your stuck with whatever notes your previous doctor wrote. This can affect how a doctor diagnoses and treats you later. I will never participate in electronic records. I'd rather just take hard copies with me.


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