I've been ruminating on a blog about this topic for a few weeks. Suddenly a few weeks ago, I noticed something online, someone had given me access to lots of my own data, someone who I hadn't expected to, my GP surgery.
It was only when the subject came up on Twitter that I realised why, because the government had given a commitment that all GP surgeries must provide online access to patients medical records, with an original deadline of the end of March 2015....although this seems to have slipped somewhat. I was unaware of this move and I'm sure many citizens are also unaware that this move was afoot. My local GP surgery uses a system called EMIS and I already use it to order repeat medications and book doctors appointments. I went online to order some meds, and noticed this new entry "view your medical records". I clicked into it and was amazed to see the level of data on display, see screenshot below:
As you can see I get access to pretty much everything there is to know about me. The most interesting reading was the 'recent documents', as this contained loads of referral letters back and forth between my doctors and various consultants during 2013/2014 when my Pituitary issue was being resolved. All the correspondence between my GP and Endocrinologist I had already seen because he kindly copies me in on everything, but the same cannot be said for all, and there was plenty I had not seen before.
So what then, I can see all this data, what am I going to do with it? On the one hand it feels right that I should have access to this information, it is MINE after all. But had I not had all my health issues in the last couple of years would I really be that bothered, probably not. Some of the data available is beyond me anyway, I can view blood test results from a full blood count taken a while back, the level of detail is staggering and I never even heard of some of the data contained within that report - Haematocrit, Neutrophil, Lymphocyte.....never heard of them. So yes, the data is there, but unless I have clinical training I can't really do anything with it. Sure I can compare one against the other and see a trend, but that's about it. Also some of the results do have a graphical indicator showing a normal range and if you fall outside that range the word 'abnormal' appears, but again, do I panic when I see that, or in fact is my 'abnormal' totally normal. So I can see that GP surgeries may in fact be a bit worried that providing all this extra information may result in a flood of phone calls from patients asking what their new found data means. The reality is that you still need an 'expert' to help you understand how the numbers are relevant to you and in fact even if the number is "right" or "wrong", this may not be reflected in your well-being. If you are feeling well as a result of some treatment, the hard numbers may only tell part of the story to how a clinician may prescribe further treatment.
An example is my recent Testosterone blood test. I had a blood test and injection in January and then another one this month, the first at a 12 week gap between injections and the most recent at 10 weeks, because after the 12 week my blood test showed my Testosterone was quite low in the 'normal' range, so we tried a 10 week period. The overall graph shows I am still on the 'low normal' range, but the pure numbers show that the levels of Testosterone in the blood are raised to what they were, so in a purely analytical sense, the 10 week versus 12 week scenario has shown an improvement. But what I will still need help with is interpreting what this means from a clinical point of view. Does this difference have any significant impact on my long term health, where in that 'normal' range should I be, or in fact does it even matter. I am fairly sure that when I am low on Testosterone I get more muscle cramps, and I believe that I have had less of them in this 10 week period, than previously. Otherwise, I'm not sure I'd notice any well-being difference between the two doses.
I like being informed when I speak to doctors, that can only be a good thing for me, but I wonder how much it complicates the patient/doctor conversation? I wonder what doctors really think of anyone like me that could in theory walk into my next appoint with lots of print-out's and questions?! Do they prefer well informed patients, or uninformed patients.....
The 'recent consultations' area of the website does contain dates of when you saw a doctor, but no detail about what or any sight of notes that the doctor may have written. This is very useful as a reminder as to when you saw a doctor for a certain issue, I like it. I'm not bothered that very little detail is shown, it is probably for the best I think.
The other point that occurs is that it feels pretty weird is the speed of which information is available. How many times have you been told by your GP surgery to ring back in a week when your blood test results will be back. In fact the blood is sent to the lab on the same day and is processed very quickly in most cases, overnight I believe. I had my recent blood test at 11am, and I could view part of my blood test result at 9am the follow day online! This is a real bonus. As it happens the Testosterone part of the test did take nearly a week to appear online, but still. It also feels a bit big-headed to be able to see this information and potentially be able to share it with your consultant before they've even realised it is there. I feel empowered, but also hesitant.
As for the other info that is available, lots of useful stuff. I can check when I had my last flu jab or tetanus jab, check what allergies are registered against me and potentially spot any errors and correct them before any issues arise. This is definitely a good thing.
So overall then, a very good initiative. Slightly odd that it was turned on by my GP surgery without any fanfare or notice, just slipped under the door quietly - if I didn't go into my online access very often I'd never have known it was there. Equally no advice on how to interpret or use this information. Finally the ever present "is it safe having all this data online" question. Well that doesn't really bother me, yes of course someone could hack into the information or guess my log-in and password....but really, is it important to someone to know my blood test results or that I had a pituitary tumour removed in 2013.....not really. If someone wants to snoop around my patient records, good luck to them!
17/04/2015 - Just a quick edit, I found an article online that shows which bits of the patient record can be chosen to be displayed, clearly someone ticked all my boxes, but a surgery could choose to display a lot less:
From a pituitary point of view, I can discuss all this with my consultant when I next see him in July. And if you're reading this now Dr Kar, I probably won't walk with lots of print-outs of my blood test results.....but may be armed with a few more questions than I otherwise might have had :-)