Back in July, as I was no doubt scrolling through Twitter, news broke of the commencement of the opt our period for My Health Record. I did feel a little standoffish upon learning that I would have a My Health Record automatically created for me in November without my permission. Naturally, I was leaning toward opting out of it.
I guess a My Health Record is like a digital version of the charts that my doctor and Diabetes Clinic keep on me. The idea of the digital My Health Record is that this information would be accessible to other healthcare professionals or places of care that I may choose to visit now or in future. I hear that I would still have access to this information, and control who I choose to share it with.
I guess, in theory, it’s not a bad idea.
Every new healthcare professional that I see would have all of my information available to review prior to a pending appointment. This would mean that they would be better prepared upon my arrival, and we would be able to make better use of the very limited time that we have together.
I wouldn’t need to complete forms while I am seated in the waiting room, asking the same questions over and over again.
I wouldn’t need to explain that I have type 1 diabetes, or have to endure the looks of confusion on my healthcare professional’s face, as though I’ve just complicated our whole appointment by flagging my health condition.
I wouldn’t have to respond to thoughtless questions about how ‘controlled’ my diabetes is, because my healthcare professional would be able to see a summary of my ‘compliance’ by attending diabetes checkups. Nor would I need to reframe my healthcare professional’s view that diabetes is something I continuously ‘manage’ rather than something that I am able to permanently ‘control’ (or not control!).
There would be far less errors in care or courses of treatment given, thanks to all of this additional information available prior. The quality of the care I receive would be richer, and I would walk away feeling that my time in the company of a healthcare professional was productive.
In theory, it’s a nice idea. I only wish that I believed it.
I expect that many healthcare professionals, particularly those in public care, would be far too busy and ‘stretched thin’ to thoroughly review any additional information they have on me via a My Health Record, particularly that pertaining to my type 1 diabetes.
I expect that there would still be errors in the courses of treatment given, particularly among those who aren’t able to advocate for themselves. I’ve seen a few loved ones now sent home from hospital well before they should in order to clear a hospital bed, watched them suffer at home for a few days, only to wind up back there a couple of days later.
People who don’t have the luxury of being well connected, or able to pay for private healthcare services are often pushed onto long waiting lists or left to fend for themselves.
Earlier this year, I only just received a referral to dermatology that my endocrinologist gave me four years ago (safe to say I had completely forgotten about that one!). People newly diagnosed with diabetes often tell me that they were told to exercise and lose weight by their doctor, but aren’t being linked in with the allied healthcare professionals who can actually explain to them what that means.
Sorry to sound skeptical, but I don’t believe that a My Health Record will enrich the quality of care that I will receive.
But maybe you do. That’s great! Regardless of where you stand, it’s important that you do your homework and make a decision as to whether you would like a My Health Record automatically created for you. The official website is here, and you’ll need to opt out before November 15 if you feel it’s not for you.
I will also leave this video here. My friend Emily, who lives with type 1 diabetes, was featured in this video endorsing My Health Record.
I have entered detail into my MHR. I too can see the advantage of having information available to health care providers, particularly if i was unconscious or otherwise unable to communicate.
What the current design of MHR does however is restrict me as a patient from putting in my own thoughts on my health and diagnoses. ( yes I can squeeze some details into the comments about my medication but that is limited). Also what if I have something I regard as important but the Health care provider decides against putting it in the clinician’s section of my MHR? For example, years ago an acquaintance of mine died because the hospital admitting doctor failed to note down in the patient’s record down an unusual reaction to a medication (whether this was because the doctor did not believe it, forgot etc who knows) and despite all the checks done in hospital with each medication given to check on allergies and reactions his record was not corrected. He died as a consequence of the very reaction he described.
So how would I highlight such a discrepancy in my record? The only thing I can do is note down my allergies and reactions to medications in my part of MHR and hope the treating doctor has time in an emergency situation to note any discrepancy between what I have entered and what the clinicians’ notes/summaries on my MHR. The computer gurus involved in MHR so far can only suggest 1) I ersuade a clinician to alter the clinician’s part of the record – not always an easy thing to do or 2) exert my right to I remove the clinician’s part /document of my record. Hardly a positive approach, like throwing out the good with the bad. I am not the only one who have approached the MHR people about this.
I’ve had a bit of a mixed experience myself with healthcare. Mostly great, but there has been an occasion where I’ve sat down with my GP (after they requested the appointment) and he’s gone ‘errr, so how can I help you?’ and another where I as recommended a course which transpired to be for type 2s… and that’s only 6 months into my T1D life.
As for MHR, I’m going down the route that it can’t hurt. If it works great, if not then I’ll probably not see any difference in reality.
EDIT: As for MHR, I’m going down the route that it can’t hurt. If it works great, if not then you’ll probably not see any difference in reality.
We in the US do not have a national electronic health record. Instead we have widely separate providers who can link if they wish. For me, I sought out a system of dispersed care under one medical record system.
I love it. I hope I never have to go back.
Overall I think it will enable more efficient health care delivery and thus – in the end – those who permanently opt-out should pay more.
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