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:
http://www.emisnug.org.uk/article/patient-online-guide-emis-web-users-part-2-enabling-patient-access-medical-record-viewer
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 :-)
So today, off I went to Southampton General Hospital, Orthoptics department for a specialist eye test.
The very first thing to note, is don't entirely trust what Dr Google tells you! Inevitably when you have a procedure coming up it is human nature to want to know what to expect. Years ago this meant trying to track down someone else who has had the procedure, but nowadays just fire up your computer and all the information is at your fingertips. But as it happens I had viewed Electroretinography video's and information for the American market, and things aren't done quite the same over here in the UK.
In America the electrodes placed on your eye are contained in a kind of contact lens and an eye speculum. In order to do this the surface of your eye is anaesthetised. But over here, all that happens is a very thin wire is placed on the eye and fastened at either side, you hardly even know it is there, it just feels slightly itchy/scratchy and I forgot about it after a while.
So what happens is that you have a couple of wires stuck onto the back of your head and onto the forehead. The lights are turned off and you then look at a TV with various flashing chequerboard images shown, but you have to look at a red dot in the middle of the screen. Alternate versions are shown and initially to both eyes then a patch over each eye. Then the electrodes are placed on the eyes and the tests repeated. Then at the end, a bright strobing light is shone into each eye, first a white light, then a blue light, then a very bright white light. I wasn't asked if I was an epileptic! All in all it is a straight forward set of tests.
What I do find odd, is having had the test in its UK form, being very non-invasive, why the Americans do things differently....different technology but the same outcome? I would assume so, is one approach better than the other?
All this data is fed through the receivers stuck to my head into a computer which interprets what my eyes have seen. I assume there is an expected level of information being received through the optic nerve and I will be measured against that, as well as each eye being measured against the other. I didn't see the computer screen the clinician was working on, but my wife tells me the wavy lines were pretty unintelligible to her. So once the data has been unscrambled a report will go to my eye consultant, who I am seeing next month. Let's wait and see what that tells me.
Overall the tests were easy to sit through and barely uncomfortable. The flashing images were a bit mesmerising and sent the eyes a bit wobbly after a while, but no lasting effect. Another test to add to the few I've had over the last couple of years.
A techie side note, I noticed the TV used was an old cathode ray tube (CRT) version, very old looking technology. This at the moment is necessary apparently because the response times of old CRT telly's is very quick, and it is necessary to sync up the response times of the brain & optic nerve with the image being displayed. Using modern flat screen LCD/LED monitors isn't currently possible because their response times aren't quick enough right now. The scientist who did my test said she doesn't know what they'll do when their screens break as they are really hard to get hold of now, because no-one makes them any more! So if you have any old telly's lying around in the garage, don't take them down the tip, donate them to your local NHS Electroretinography unit (only joking!)
Hiya, quick update from me, can't believe it is April already....not too far from two years since diagnosis of the pituitary tumour.
Generally health is still very good, the Hydrocortisone tablets and Testosterone injections are working well and my only ongoing concern is the eye fuzziness and the slightly tingly left leg. On the subject of the eye, I now have an appointment in the diary for Electrodiagnostic tests at Southampton General Hospital to hopefully give the experts a clue as to what is going on with my optic nerve. They are obviously fairly unusual as although they are described in the letter from the hospital as 'routine', they are also 'highly specialised' and are carried out by a 'clinical vision scientist'. So they should be interesting if nothing else.
As for the tingly leg, that is still settled to a base level. Interestingly I now have online access to my patient health records via my doctors surgery. In the letter from the consultant to my doctor, which I never saw a copy of, it said that I had no nerve damage but some minor impingement and that I would probably have "spontaneous recovery in due course". I look forward to that!
The real reason for this update though is a bit embarrassing, I forgot to take my Hydrocortisone (HC) pill on Sunday evening....for the first time ever I think. Now, although I don't really think about it, if I were to stop taking my HC pills I would in due course die. I'm not intending to test this out of course, but on Easter Sunday I did forget to take my 6pm dose. My excuse was that it was an unusual day where my routine was upset from normal, I didn't realise I had forgotten it until 1pm on Easter Monday. When I woke up on Monday I had a really bad headache and felt completely washed out. I don't suffer headache's very often so it was a bit unusual, so I just took some paracetamol and got on with my day, but I was really lacking energy. Then at lunchtime, I went to take my usual HC dose and as soon as I opened the packet I knew the amount was wrong (I used a different packet for my breakfast dose) and suddenly it dawned on me as to why I'd felt so rough all morning.
So on the the one hand, no harm done, but on the other hand a bit of an eye opener. Even by lunchtime I had bucked up considerably, still had a headache but energy levels were much better. By mid afternoon I was absolutely fine....but all that because I missed 5mg of HC (I can't think of any other reason for it). So just in case there was any doubt, of course there isn't, that I need these tablets there it is. I was a bit shocked that it had such an effect on me, probably exacerbated by having had quite a busy day on Sunday.
In 2 years it is the first time I have missed a dose, so I can't be too hard on myself. But it is a timely reminder not to take the HC for granted, it does keep me healthy and alive and my pill taking is enough of a habit that even though I missed a dose, I did realise in the end. So I've duly slapped myself on the wrist.
As I said at the start of this blog entry, I am coming up to two years since diagnosis and tumour removal, so I'm wondering what I could add here to help newly diagnosed pituitary patients? Other than reminding people (in the UK anyway) about the wonderful services of www.pituitary.org.uk who have a wealth of advice on their website as well as a very well respected Endocrine Nurse helpline.
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